Introduction to Person-Centred Medicine: from Concepts

Journal of Evaluation in Clinical Practice ISSN 1365-2753

From the Second Geneva Conference on Person Centered Medicine Person-Centered Medicine: From Concepts to Practice EDITORIAL Introduction to person-centred medicine: from concepts

to practicejep_1606 330..332 Juan E. Mezzich MD PhD,1 Jon Snaedal MD,2 Chris van Weel MD PhD,3 Michel Botbol MD4 and Ihsan Salloum MD MPH5

1President, International Network for Person-centered Medicine, President 2005–2008, World Psychiatric Association and Professor of Psychiatry, Mount Sinai School of Medicine, New York University, New York, USA 2President 2007–2008, World Medical Association and Board Member, International Network for Person-centered Medicine, Department of Geriatrics, Landspitali University Hospital, Reykjavik, Iceland 3President 2007–2010, World Organization of Family Doctors, Board Member, International Network for Person-centered Medicine and Professor of General Practice, Radboud University, Nijmegen, The Netherlands 4Board Member, International Network for Person-centered Medicine and Associate Professor, School of Psychology, Catholic University, Paris, France 5Board Member, International Network for Person-centered Medicine and Professor of Psychiatry, University of Miami, Miami, Florida, USA

Keywords Correspondence person-centred medicine, science and Professor Juan E. Mezzich Accepted for publication: 11 October 2010 humanism in medicine Mount Sinai School of Medicine New York University doi:10.1111/j.1365-2753.2010.01606.x Fifth Ave and 100th St, Box 1093 New York, NY 10029 USA E-mail: [email protected]

The early roots of the concept of person-centred medicine can be the International Council of Nurses (ICN), the European Federa- found in the comprehensive notion of health and the personalized tion of Associations of Families of People with Mental Illness approaches to medical care discernible in both Eastern and (EUFAMI), the International Alliance of Patients’ Organizations Western ancient civilizations [1,2]. Other signiﬁcant precedents (IAPO) and the Paul Tournier Association. include contemporary developments in clinical medicine and The Conference had as principal purposes to examine and public health challenging an overemphasis on speciﬁc organs and discuss key concepts of person-centred medicine and practical disease and seeking to place the whole person at the centre of approaches for its implementation, to elicit useful initiatives on medicine [3]. person-centred medicine and to engage international medical and The recent coordinated global effort towards person-centred health organizations on the Conference’s theme. medicine started with an inaugural Geneva Conference on Person- The Conference Organizing Committee was composed of J.E. centred Medicine in May 2008. It involved the collaboration of Mezzich (World Psychiatric Association President 2005–2008), J. major international medical and health organizations and a group Snaedal (World Medical Association President 2007–2008), C. of committed clinicians and scholars [4]. van Weel (World Organization of Family Doctors President 2007– The Second Geneva Conference took place on 28 and 29 May 2010) and I. Heath (World Organization of Family Doctors Execu- 2009 under the auspices of the University of Geneva Medical tive Committee Member at Large). The Conference Secretariat School and the University Hospitals of Geneva organized by the was based at the International Center for Mental Health, Mount World Medical Association (WMA), the World Organization of Sinai School of Medicine, New York University. Family Doctors (Wonca) and the International Network for Financial and in-kind support for the Conference was provided Person-centered Medicine (INPCM), in collaboration with the by the University of Geneva, the Paul Tournier Association of Council for International Organizations of Medical Sciences Geneva, Person-centered Medicine & Psychiatry Programs, Con- (CIOMS), the World Federation for Mental Health (WFMH), the ference registration fees and the emerging International Network World Federation of Neurology (WFN), the World Association for for Person-centered Medicine [5]. Sexual Health (WAS), the International Association of Medical The Conference was opened by the Rector of the University Colleges (IAOMC), the World Federation for Medical Education of Geneva and the Vice-Dean of its Medical School, as well as (WFME), the International Federation of Social Workers (IFSW), by the members of the Conference Organizing Committee. All

330 © 2010 Blackwell Publishing Ltd, Journal of Evaluation in Clinical Practice 17 (2011) 330–332 J.E. Mezzich et al. Editorial remarked on the tradition that was being established engaging opment of pertinent guidelines and curricula for person-centred Geneva as encounter point for the development of person-centred clinical care, the assessment of an epistemologically based person- medicine. centred medicine at Ambrosiana University in Milan, training and The first scientific session involved presentations of leaders and research on communication for person-centred outcomes, and representatives of the International Alliance of Patients’ Organi- broad programmatic features and objectives of research on person- zations, the International Network for Person-centered Medicine, centred clinical care. the World Health Organization, the World Medical Association, The ninth conference session reviewed person-centred health the World Organization of Family Doctors, the Council of Inter- systems and policies. WHO’s new focus on persons for the devel- national Organizations of Medical Sciences and the International opment of more promising global health policies and systems, as Council of Nurses. The presentation of policy statements and affirmed by the latest World Health Assembly, was given pointed relevant institutional programmes reflected the value ascribed by attention. Also discussed was the role of health informatics for the these organizations to person-centred medicine. The abstracts of construction of personalized medicine and complex health care the presentations made at this and the following sessions of the systems. Last but not least was a review of the role and docu- Second Geneva Conference have been posted at the INPCM mented value of the person for the conduction of health care, website, http://www.personcenteredmedicine.org. training and research Eight special initiatives relevant to person-centred care were The final tenth session presented a conference summary and presented in the second session. The presentations were made by outlined next steps. Among the general conclusions were (1) a representatives of several major organizations collaborating in commitment to the importance of person-centred medicine for the Second Geneva Conference and other prominent work groups. the health of people, noting the participation of a vast array of The diverse experiences presented from a range of fields revealed important medical and health organizations, a wish to share substantive achievements and promising opportunities for a medi- and collaborate and an understanding of the importance of grasp- cine of the person. ing opportunities in the field; (2) the growing availability of Concepts and meanings of person-centred medicine were the resources, including general concepts and procedures as well subject of the third session. They focused on the role and worth of as teaching materials and research tools; and (3) the importance the person in medicine, the cruciality of sense of identity, empathy of fitting the above resources into health care systems and into and engagement for optimal clinical care, and the value and impact particular health care encounters, with especial attention to of life experiences for the development in each individual of per- person-centredness as an intrinsic quality rather than as an addi- sonalized medicine and health. tional commodity, and the value of comprehensiveness, continu- The fourth session presented and discussed procedures for ity, and attention to context as crucial features of good clinical person-centred diagnosis. Particularly covered were the signifi- care. cance of multilevel explanations and diagnosis in medicine, the Anticipated next steps included the following: (1) completion of key features of a person-centred integrative diagnosis addressed a joint editorial to be published in an international journal; (2) to appraise whole health using standardized and narrative preparation of a Second Geneva Conference Summary Report, (3) descriptions reflecting interactions among clinicians, patient and publication of a set of selected papers presented at the Second family, as well as the prospects for person-centred diagnosis in Geneva Conference; (4) collaboration with WHO on Person- general medicine. centred Medicine topics related to the 2009 World Health Assem- A panel on programmatic contributions for person- bly Resolutions; (5) organization of scientific events relevant to centred medicine in a fifth session offered an opportunity for person-centred medicine, such as a prospective New York Confer- the presentation of brief statements by representatives of ence on Well-Being and Person in Medicine and Health; (6) plan- 12 collaborating organizations and groups from across the world. ning a clearinghouse of Person-centred Medicine documents; (7) They attested to the relevance of person-centred approaches upgrading an internet platform to support archival, informational, to medicine for an ample range of medical, health and social communicational and programmatic needs; (8) organization of a institutions. Third Geneva Conference on Person-centred Medicine in early The sixth session, at the beginning of the second day of the May 2010, prospectively focused on a team approach across spe- Conference, discussed procedures for person-centred treatment cialties and disciplines; and (9) development of an International and health promotion. These included general features of person- Network for Person-centered Medicine to stimulate the above centred integrative care, the prospects for a person-centred medical activities and to organize initiatives on conceptual and ethical home in the USA, and WHO perspectives on person-centred bases, diagnosis, clinical care, training, research, health systems healthiness, social determinants and health promotion. and public policies. Person-centred medicine for children and older people Proposals for future conferences included building bridges to was discussed in the Conference seventh session. Such vulner- the various specialties in medicine, the participation of different able populations represent particular challenges and opportuni- patient groups and the inclusion of representatives of additional ties from scientific and ethical viewpoints. The uniqueness and health disciplines. Emphasis was made on consolidating the ideas developmental sensitivity of the child were highlighted. Also from the first two conferences, and to use that for further work to pointed out were the complexity of health conditions in older enhance person-centred medicine. people and the imperative need to attend to their values and The Second Geneva Conference was distinctly perceived by perspectives. its participants as a stimulating success in terms of food for Training and research on person-centred medicine was the thought and shared commitment to build a paradigmatic shift in subject of the eighth session. Specific topics included the devel- medicine and health care. A Third Geneva Conference was widely

© 2010 Blackwell Publishing Ltd 331 Editorial J.E. Mezzich et al. anticipated as the next landmark in this unfolding process with the References emerging International Network for Person-centered Medicine as the collaborative and ﬂexible structure to coordinate and move 1. Patwardhan, B., Warude, D., Pushpangadan, P. & Bhatt, N. (2005) forward a vision and programmatic efforts. Ayurvedic and traditional Chinese medicine: a comparative overview. In order to extend the impact of the Second Geneva Conference, Evidence-Based Complementary and Alternative Medicine, 2, 465–473. a plan was arranged with the Journal of Evaluation in Clinical 2. Christodoulou, G. N. (ed.) (1987) Psychosomatic Medicine. New York: Practice to publish a selection of the papers presented at the Plenum Press. Conference. The authors of this Introduction, members of the 3. Mezzich, J., Snaedal, J., van Weel, C. & Heath, I. (2010) Toward Board of the International Network for Person-centered Medicine, person-centered medicine: from disease to patient to person. Mount Sinai Journal of Medicine, 77, 304–306. assumed editorial responsibility to work with the authors of the 4. Mezzich, J. E., Snaedal, J., Van Weel, C. & Heath, I. (eds) (2010) selected papers in upgrading them for publication. The papers are Conceptual explorations on person-centered medicine. International presented thematically ordered in terms of institutional and policy Journal of Integrated Care, Supplement, 10. perspectives, clinical concepts and clinical practice. We hope they 5. Mezzich, J. E., Snaedal, J., van Weel, C. & Heath, I. (2009) The offer a valuable contribution to the process of building person- International Network for Person-centered Medicine: Background and centred medicine. First Steps. World Medical Journal, 55, 104–107.

From the Second Geneva Conference on Person Centered Medicine Person-Centered Medicine: From Concepts to Practice The Geneva Conferences and the emergence of the

International Network for Person-centered Medicinejep_1576 333..336 Juan E. Mezzich MD PhD

President, International Network for Person-centered Medicine, President 2005–2008, World Psychiatric Association, Professor of Psychiatry, Mount Sinai School of Medicine, New York University, New York, USA

Keywords Abstract people-centred public health, person-centred medicine The yearly Geneva Conferences on Person-centered Medicine started in May 2008 as a collaborative effort of global medical and health organizations and committed clinicians Correspondence and scholars to place the whole person at the centre of medicine and health care. They were Mount Sinai School of Medicine informed by the traditions of great ancient civilizations and recent developments in clinical New York University, care and public health. The process of the Geneva Conferences led to the development of Fifth Avenue & 100th Street the International Network for Person-centered Medicine as a non-for-proﬁt institution Box 1093 aimed at organizing future editions of the Geneva Conference and building person-centred New York, NY 10029 medicine as a paradigmatic repriorizing of the medical and health ﬁelds in collaboration USA inter alia with the World Medical Association, the World Health Organization and the E-mail: [email protected] World Organization of Family Doctors.

Accepted for publication: 11 October 2010 doi:10.1111/j.1365-2753.2010.01576.x

Introduction the INPCM out of the Geneva Conferences process, its first institutional steps and early outlook. The first edition of the Geneva Conference on Person-centered Medicine (when nobody knew if there would be another one) was Historical background organized in May 2008 by the World Psychiatric Association (WPA) through its Institutional Program on Psychiatry for the The earliest roots of person-centred medicine can be found in Person (IPPP) in collaboration with the World Medical Associa- ancient civilizations, both Eastern (such as Chinese and Indian tion (WMA), the World Organization of Family Doctors (Wonca) Ayurvedic) [1] and Western (particularly ancient Greek) [2], which and several other global medical and health institutions under the tended to conceptualize health broadly and holistically. In fact, the auspices and on the premises of the Geneva University Medical meaning of the term health in Sanskrit, the mother of all Indo- School. Its overall theme was the exploration of the conceptual European languages, is totality. Also noticeable in medical tradi- bases of a medical and health paradigm that refocuses their priori- tions from those early civilizations is a personalized approach to ties from disease to the whole person. The momentum generated health care still practised in those lands. All these notions found a by this first encounter of distinguished clinical scholars and rep- house in the encompassing definition of health, a state of complete resentatives of top professional associations led to the immediate physical, mental and social well-being and not merely the absence planning and organization of the Second Geneva Conference in of disease or infirmity, inscribed in the constitution of the World May 2009. Its general theme involved the articulation of concepts Health Organization [3]. and practice, in line with the well-thought-out interventional The development of medicine in modern times has shown nature of medicine. Similar dynamics and the need to have a firm impressive scientific advances on the understanding of illness and institutional base to organize in a collaborative manner future innovative diagnostic and therapeutic technology. At the same Geneva Conferences and the further development of the field led to time, such development has been accompanied by a number of the decision to establish the International Network for Person- distortions in the priorities and ethos of medicine [4]. Medical centered Medicine (INPCM). attitudes and practices have become drastically focused on disease This paper briefly reviews the ancient and modern historical and specific organs. Growing super specialization has led to com- background of this new paradigm. It then summarizes the objec- partmentalization of knowledge and fragmentation of services. tives and proceedings of the first two Geneva Conferences on Medicine has become to a certain extent a product to be com- Person-centered Medicine. Finally, it delineates the emergence of mercialized as commodities are. Consequently, communication

© 2010 Blackwell Publishing Ltd, Journal of Evaluation in Clinical Practice 17 (2011) 333–336 333 The Geneva Conferences and the International Network J.E. Mezzich among health professionals and especially between these and WMA is re-affirming the enduring traditions of the medical pro- patients and their families has become superficial and precarious, fession [13]. Furthermore, the physicians’ obligation to respect with subsequent neglect in the attention to the patients’ concerns, human life rather than to extend it blindly has been cogently needs and values. Hiperbolic concern for disease has led to lack of argued by former WMA president Jon Snaedal [14]. The Wonca interest on the positive aspects of health and on the patients’ assets. has recorded its commitment to persons and community in This has marginalized prevention and health promotion. The ful- its basic concepts and values – continuity of care for all health filment of ethical aspirations, such as the promotion of personal problems in all patients within a societal context (http://www. autonomy, responsibility and dignity, has suffered. A rigid and woncaeurope.org). scientistic observance of evidence-based practice has led to The WPA revealed since its foundation in 1950 clear indications neglect both of the person’s experience and subjectivity and of of interest on person-centred care through its aspirations for health actions that in addition to curing are aimed at alleviation and science and humanism [15]. That interest evolved to the point that consoling [5]. in 2005 the WPA General Assembly established an Institutional Program on Psychiatry for the Person. This programme sought to Contemporary advances on the promote a psychiatry of the person, for the person, by the person personalization of medicine and with the person [16]. Among its signal conferences were those organized in London (October 2007) in collaboration with the UK Endeavours to refocus medicine on the person of the patient, the Department of Health and in Paris (February 2008) in cooperation clinician and the members of the community at large have been with the WPA French Member Societies. In addition to a number distinctly noted in the past century. Illustratively, Paul Tournier, a of journal papers, monographs have been prepared on the Concep- Swiss general practitioner, discovered the transformational value tual Bases of Psychiatry for the Person [17] and on Psychiatric of critical interpersonal experiences and of attending to the whole Diagnosis: Challenges and Prospects [18]. person and the biological, psychological, social and spiritual aspects of health. He presented his vision on Medicine de la The organization and meaning of Personne [6] and 19 other books translated to over 20 languages. the Geneva Conferences on Around the same time, American psychologist Carl Rogers Person-centered Medicine demonstrated the significance of open communication and of empowering for individuals to achieve their full potential [7] and The first two editions of the Geneva Conference on Person- proceeded to develop a person-centred approach to therapy, coun- centered Medicine took place at the Geneva University Hospitals selling and education. on 29–30 May 2008 and 28–29 May 2009. They represented both During the second half of the 20th century, Frans Huygen in landmarks and flagships in a process of building an initiative on the Netherlands, Ian Mc Whinney in the UK and Canada, and Jack medicine for the person through the collaboration of major global Medalie in the USA and Israel struggled with the limitations medical and health organizations and a growing group of dedi- of modern medicine noted above and committed themselves to cated scholars and clinicians. The institutions formally involved in promote a broad and contextualized understanding of health with either or both Conferences included the WMA, the Wonca, the high concern for their patients’ well-being. They went on to WPA IPPP, the Council for International Organizations of Medical develop a generalist medical specialty under the terms of general Sciences, the World Federation for Mental Health, the World Fed- practice and family medicine [8,9], which has characteristically eration of Neurology, the World Association for Sexual Health, the focused on patient-centred care. International Association of Medical Colleges, the World Federa- Sustained efforts to establish a person-centred medicine pro- tion for Medical Education, the International Federation of Social gramme on epistemological grounds and to build a corresponding Workers, the International Council of Nurses, the European medical school and clinical teaching method have been undertaken Federation of Associations of Families of People with Mental by Giuseppe Brera [10], rector of Ambrosiana University in Milan. Illness, the International Alliance of Patients’ Organizations, the Yrjo Alanen [11] in Finland privileged attention to the meaning of University of Geneva School of Medicine and the Paul Tournier patients’ experiences and the importance of their needs, and cre- Association. To coordinate these efforts and strengthen the devel- atively combined psychosocial and pharmacological therapies. opment of the field emerged from the Geneva Conferences process Illustrating responses from global medical and health organi- the INPCM, which in fact became the core organizer of the Second zations, the World Health Organization, which incorporated in Geneva Conference. its foundational constitution the above mentioned comprehensive The First Geneva Conference on Person-centered Medicine definition of health, has recently started discussions to introduce was aimed at presenting and discussing the experience on person- in it the term dynamic, meaning interactive, to characterize the centred principles and procedures gained through a Person- relationship among dimensions of well-being and to add a spiri- centered Psychiatry Program, exploring the conceptual bases of tuality dimension. Furthermore, for the first time, WHO is placing person-centred medicine, and engaging interactively major inter- people and person at the centre of healthcare and public health, as national medical and health organizations and scholars in the field. reflected on the resolutions of the World Health Organization’s It included sessions on international organization perspectives on 2009 World Health Assembly [12]. person-centred medicine, related special initiatives, conceptual The WMA through its Declaration of Helsinki for Medical bases of person-centred medicine, personal identity, experience Research and the International Code of Medical Ethics [http:// and meaning in health, a review of Paul Tournier’s vision and www.wma.net (press releases)] is emphasizing its concern for the contributions, person-centred health domains, clinical care orga- whole person. Through the triad of caring, ethics and science, the nization, person-centred care in critical areas, and person-centred

334 © 2010 Blackwell Publishing Ltd J.E. Mezzich The Geneva Conferences and the International Network public health. The upgraded papers presented at the Conference the person (with clinicians extending themselves as full human have been published as a supplement of the International Journal beings, well grounded on science and with high ethical aspira- of Integrated Care [19]. tions) and with the person (working respectfully, in collaboration One year later, the Second Geneva Conference was aimed at and in an empowering manner through a partnership of patient, probing further key concepts of person-centred medicine and family and clinicians). The person here is conceptualized in a fully reviewing a number of practical approaches for the implemen- contextualized manner, consistent with the words of philosopher tation of this approach through a collaborative effort with an Ortega y Gasset, I am I and my circumstance. enlarged number of international health organizations. Through Among the key principles of person-centred care are the follow- nine sessions, it covered institutional perspectives and activities on ing: (1) a wide biological, psychological, socio-cultural and spiri- person-centred medicine, other relevant initiatives, concepts and tual theoretical framework; (2) attending to both ill health and meanings of person-centred medicine, procedures for diagnosis, positive health; (3) person-centred research and education on the treatment and health promotion in medicine for the person, person- process and outcome of patient–family–clinician communication, centred medicine for children and older people, as well as training, diagnosis as shared understanding, and treatment, prevention and research, health systems and policies on person-centred medicine health promotion as shared commitments; (4) respect for the [20]. autonomy, responsibility and dignity of every person involved; and Among the conclusions of the Second Geneva Conference were (5) promotion of partnerships at all levels [21]. a wide commitment to the importance of person-centred medicine Anticipated INPCM activities include the following: (1) orga- for the health of persons and populations, clarification of the nization of conferences and other scientific meetings promoting availability of conceptual, educational and research tools, and the person-centred care in medicine at large and in its various special- need to fit these into health encounters and systems, affirming ties and related health fields; (2) preparation of person-centred person-centredness as an intrinsic quality rather than as an addi- clinical practice guidelines relevant to diagnosis, treatment, pre- tional commodity. There was consensus on organizing a Third vention, rehabilitation and health promotion; (3) preparation of Geneva Conference where emphasis would be placed on building educational programmes, including curricula, aimed at the training further bridges to the specialized sphere of medicine, other health of health professionals on person-centred care; (4) conduction professions and various patient groups. Among additional next of studies and research projects to explore and validate person- steps are the organization of relevant scientific events such as a centred care concepts and procedures; (5) preparation of publica- New York Conference on Well-Being and the Person, publication tions, including an International Journal of Person Centered of a joint editorial in an international journal, preparing a mono- Medicine, to disseminate and advance the principles and practice graph with the papers presented at the Second Geneva Conference, of person-centred medicine; (6) development of advocacy forums responding positively to requests from WHO for collaboration on and activities to extend and strengthen person-centred medicine people-centred care strategies adopted by the 2009 World Health with the participation of clinicians, patients and families, as well as Assembly, and further development of the INPCM to help move members of the community at large; and (7) establishment of an forward collaboratively an optimized vision for health care. Internet platform to support archival, informational, communicational and programmatic efforts on person-centred medicine. The emergence and construction Organizations and individuals participating actively in relevant of the International Network for programmatic activities, such as the Geneva Conferences, will be Person-centered Medicine invited to join the INPCM. It will be organizationally developed and guided initially by a board of five or six persons with a clear The INPCM is a direct conceptual and organizational outcome of track record of work on person-centred medicine and committed the first two Geneva Conferences. In turn, it has become the main to the advancement of the fundamental purposes of the organiza- organizer of ensuing Geneva Conferences in collaboration with a tion. Support for the INPCM and its activities is expected to come, growing number of top medical and health institutions and an also as it has been for its initial steps, from academic institutions, growing community of international experts. As of May 2009 the professional societies, governmental organizations, foundations, INPCM has been incorporated in New York as a non-for-profit person-centred medicine and psychiatry non-profit academic educational, research and advocacy organization aimed at devel- programme funds, and conference registration fees. Support from oping opportunities for a fundamental re-examination of medicine industry sources may be accepted provided it is transparent and and health care to refocus the field on genuinely person-centred unrestricted. Further information on the INPCM can be obtained care. by visiting http://www.personcenteredmedicine.org Discussions at the Geneva Conferences have led to the formulation of person-centred medicine as dedicated to the promotion of Concluding remarks health as a state of physical, mental, social and spiritual well-being as well as to the reduction of disease, and founded on mutual The reformulation of the central mission of medicine, recognizing respect for the dignity and responsibility of each individual person. the person as its fundamental focus and not simply a carrier of To this effect, the INPCM seeks to articulate science and human- disease, is informed by the wisdom from great ancient civilizations ism in a balanced manner, engaging them at the service of the and recent developments in clinical medicine and public health. whole person. The purposes of the INPCM may be further sum- Inertia among professionals and strongly established special inter- marized as promoting a medicine of the person (of the totality of ests represent enormous challenges. However, the growing con- the person’s health, including its ill and positive aspects), for the vergence in the perspectives of the most important global health person (promoting the fulfilment of the person’s life project), by institutions, from the WMA to the World Health Organization as

© 2010 Blackwell Publishing Ltd 335 The Geneva Conferences and the International Network J.E. Mezzich well of representatives of patients and families and dedicated aca- 10 Brera, G. R. (1992) Epistemological aspects of medical science. demic groups and emerging conceptual and experimental research Medicine and Mind, 7, 5–12. support such repriorizing. The Geneva Conferences and the 11 Alanen, Y. (1997) Schizoprenia: Its Origins and Need-Adaptive INPCM represent major forums and players on this paradigmatic Treatment. London: Kamak. journey to cultivate the soul and science of medicine and health. 12 World Health Organization (2009) World Health Assembly Resolu- tions on Primary Health Care, including health system strengthening. WHA 62.12, 22 May 2009. References 13 Coble, Y. (2005) Caring Physicians of the World. Ferney-Voltaire: World Medical Association. 1 Patwardhan, B., Warude, D., Pushpangadan, P. & Bhatt, N. (2005) 14 Snaedal, J. (2007) Presidential address. World Medical Journal,53, Ayurvedic and traditional Chinese medicine: a comparative overview. 101–102. Evidence-Based Complementary and Alternative Medicine, 2, 465– 15 Garrabe, J. & Hoff, P. Historical views on Psychiatry for the Person. 473. In Conceptual Bases of Psychiatry for the Person. Psychopathology 2 Christodoulou, G. N. (ed.) (1987) Psychosomatic Medicine. NewYork: (eds J. E. Mezzich, G. Christodoulou & K. W. N. Fulford) (in press). Plenum Press. 16 Mezzich, J. E. (2007) Psychiatry for the person: articulating medicine’s 3 World Health Organization (1946) WHO Constitution. Geneva: WHO. science and humanism. World Psychiatry, 6, 1–3. 4 Heath, I. (2005) Promotion of disease and corrosion of medicine. 17 Mezzich, J. E., Christodoulou, G. & Fuldford, K. W. M. (eds) Canadian Family Physician, 51, 1320–1322. Conceptual Bases of Psychiatry for the Person. Psychopathology 5 Miles, A., Loughlin, M. & Polychronis, A. (2008) Evidence-based (in press). healthcare, clinical knowledge and the rise of personalised medicine. 18 Salloum, I. M. & Mezzich, J. E. (2009) Psychiatric Diagnosis: Journal of Evaluation in Clinical Practice, 14, 621–649. Challenges and Prospects. Chichester, UK: Wiley-Blackwell. 6 Tournier, P. (1940) Medicine de La Personne. Neuchatel, Switzerland: 19 Mezzich, J. E., Snaedal, J., Van Weel, C. & Heath, I. (eds) (2010) Delachaux et Niestle. Conceptual explorations on person-centered medicine. International 7 Rogers, C. (1961) On Becoming A Person. Boston: Houghton Mifﬂin. Journal of Integrated Care, Vol. 10. Supplement. 8 McWhinney, I. R. (1989) Family Medicine: A Textbook. Oxford: 20 Mezzich, J. E. (2009) The Second Geneva Conference on Person- Oxford University Press. centered Medicine. World Medical Journal, 55, 100–101. 9 Huygen, F. J. A. (1978) Family Medicine – the Medical Life History of 21 Mezzich, J., Snaedal, J., van Weel, C. & Heath, I. (2010) Toward Dutch Families, Brunner Mazel, New York, 1982. Nijmegen: Dekker person-centered medicine: from disease to patient to person. Mount en van der Vegt. Sinai Journal of Medicine, 77, 304–306.

From the Second Geneva Conference on Person Centered Medicine Person-Centered Medicine: From Concepts to Practice Person-centred medicine in the context of primary care: a view from the World Organization of Family

Doctors (Wonca)jep_1577 337..338 Chris van Weel MD PhD

Professor of Family Medicine, Department of Primary and Community Care, Radboud University Nijmegen Medical Centre, Nijmegen, The Netherlands

Keywords Abstract continuity of care, family medicine, personal doctor, primary care Rationale, aims and objectives Most professional medical care is provided in the community, and this determines the importance of primary care for the health care system. As Correspondence family doctors are involved in the care of different health problems over time to the same Professor Chris van Weel individual, the personal dimension is strong. This paper analyses the importance of person- Department of Primary and Community centred medicine from the perspective of primary care and family medicine. Care Methods The views and opinions of the leadership of the World Organization of Family Radboud University Nijmegen Medical Doctors, Wonca, provided the background material. Wonca brings together national col- Centre leges and academies of family medicine around the world. 117-HAG, PO Box 9101 Results The community, with its social, cultural and economic characteristics, is an 6500 HB Nijmegen important determinant of illness, health and disease. This shapes the personal relation The Netherlands between patient and family physician, with its basis of trust, and determines the effective- E-mail: [email protected] ness with which primary care functions. Continuity and integration of care are important person-centred ‘techniques’. Accepted for publication: 11 October 2010 Conclusions As the effectiveness of primary care is a major factor for overall effective health care, it is important to come to a better understanding of how to address the personal doi:10.1111/j.1365-2753.2010.01577.x context of care and the mechanisms through which this determines outcome of care.

Most people with most of their health problems can be found in The community base of primary care brings with it an involve- the community, most of the time: the ‘ecology of medical care’ ment in that community, and a focus on the population that lives [1] stresses the importance of self-care and lay care, in dealing there [3]. This in turn brings with it an orientation on the prevailing with society’s burden of illness. Professional health care is only social, cultural and economic characteristics of that community, involved in a minority of health problems people experience, which determine health. This established partnership with a depending their decision to actually contact a health care profes- defined population and community over time is the context in sional. And although many consider this [1], only about one in 10 which family doctors and other primary care professionals work. actually do so [2]. And in most cases, this will be a doctor or other This is the setting in which people find access for unselected health health care professional in the community they live in. This, health problems in the course of their personal medical history, to find the care in the community, is the domain of primary care and family most appropriate response. As a consequence, primary care and medicine [3]. This paper explores the importance of person- family medicine are dominated by the personal context of the centred medicine from the perspective of primary care and the persons that make-up the community it serves. Family physicians professional role of family physicians. are as a consequence responsible for the most important health needs in the community and see over time, a variety of health Primary care function problems in the same individuals, without restrictions to body system, quality of life or severity [4]. The ‘ecology of health care’ model [1] illustrates the central position of primary care, and of family doctors, as the liaison between population – community and the health care system. People Concepts, effectiveness of care and the present whichever health problems they feel the need to see a person at the centre doctor for, and this individual presentation is the start of the episode of professional care. The ‘ecology model’ underlines as Primary care, in other words, is oriented at people and populations, well, that most episodes of professional care will take place in rather than at pre-defined diseases or interventions as stand-alone the community, within primary care itself, while about 10% will issues. The person-centred nature comes forward in a number include the hospital setting and medical specialists [1,2]. of core concepts [3]: the role of the medical generalist, who is

© 2011 Blackwell Publishing Ltd, Journal of Evaluation in Clinical Practice 17 (2011) 337–338 337 Person-centred medicine, primary care C. van Weel responsible for all health problems, in all stages, without pre- unravel the paradox of why generalist health care with an emphasis selection towards their nature, or specific patients’ groups; the on the person with the disease is more effective than treatment of orientation on the context of the person with the disease, in terms diseases in isolation. At this moment, this is a black box [8] with of the community, the family or household and with it social the paradigms of person-centred care, integration, continuity of determinants of illness, health and disease. In this, primary care care over time and care in the context of the family and social brings together the psycho-socio-physical domains of illness and environment as mere hypotheses. health: it integrates different care concepts (integrated care) and structures it over time (continuity of care). In this, there is strong emphasis on the personal dimension: family physicians and Conclusions other primary care professionals foster a personal relation of Gaining more insight in person-centred medicine is essential to trust with their patients over time, and in this, care is centred at make it possible to further strengthen health care for people and the person of the patient. These are the concepts that determine populations. This way, health care can secure its moral obligation the effectiveness with which family physicians – and primary care to provide care according to the principles of equality and equity: at large – function. (i) all people are equal and equally entitled to the best care available; while (ii) focusing care towards those in greatest needs Implications for health care systems according to their individual and social context. Effectiveness of primary care is a major factor in determining the overall performance of the health care system – the stronger References primary care is, the better population health is achieved [5]. This should be set against grave concerns of the failure of health care, 1. Green, L. A., Fryer, G. E., Yawn, B. P., Lanier, D. & Dovey, S. M. to contain the costs it causes and its failure to respond to rising (2001) The ecology of medical care revisited. The New England social expectations of health care that is people-centred, fair, Journal of Medicine, 344, 2021–2025. affordable and efficient. Primary health care’s emphasis on people, 2. van de Lisdonk, E. H. (1989) Perceived and presented morbidity in general practice. Scandinavian Journal of Primary Health Care,7, the person with the disease, and not just the successful treatment of 73–78. a disease is a core element of its success [6] and from this stems 3. Wonca Europe The European definition of general practice/family the call to strengthen health care systems through primary care. medicine. Wonca Europe 2002. The European Definition of General The development of primary health care at the basis of the system Practice/Family Medicine (accessed September 3rd, 2010). of care, was therefore regarded by the World Health Organization 4. van Weel, C. & de Grauw, W. J. C. (2006) Family practices registration (WHO) as the possibility to secure three vital societal imperatives: networks contributed to primary care research. Journal of Clinical (i) improve population health; (ii) preserve the financial viability Epidemiology, 59 (8), 779–783. of the health care system; and (iii) restore the orientation of the 5. WHO – Sixty-Second World Health Assembly (2009) Primary person with the disease: – ‘people at the centre of health care’ [5]. Health Care, Including Health System Strengthening. Geneva: WHO. This has placed person-centred medicine right at the middle of WHA62.12. 6. Stange, K. C. & Ferrer, R. L. (2009) The paradox of primary care. health care policy that WHO’s World Health Assembly did set out Annals of Family Medicine, 7, 293–299. to be pursued, in 2009. 7. Van Weel, C. & Sparks, B. (2007) Caring for people’s health around the This has led the World Organization of Family Doctors, Wonca, world: a family physician in every community. Family Medicine,37, to pursue that every family in the world should have access to a 616–617. family doctor, a family physician for every community [7]. Yet, it 8. van Weel, C. (2006) Steadfast flexibility – supporting good care. New is important to understand better the mechanisms behind this and Zealand Family Physician, 33, 234–238.

From the Second Geneva Conference on Person Centered Medicine Person-Centered Medicine: From Concepts to Practice People-centred medicine and WHO’s renewal of primary

health carejep_1587 339..340 Yongyuth Pongsupap MD MPH PhD1 and Wim Van Lerberghe MD PhD2

1Senior Expert, National Health Security Ofﬁce, The Goverment Complex, Bangkok, Thailand 2Director, Department for Health System Governance and Service Delivery, World Health Organization, Geneva, Switzerland

Keywords Correspondence Accepted for publication: 11 October 2010 person-centredness, primary health care Dr Yongyuth Pongsupap Health Care Reform Project doi:10.1111/j.1365-2753.2010.01587.x National Health Security Ofﬁce The Goverment Complex 120 Moo 3 Chaengwattana Road Lak Si District Bangkok 10210 Thailand E-mail: [email protected]

When people are sick they are a great deal less concerned about results in measurably increased trust and compliance [4] that managerial considerations of productivity, health targets, cost- allows patient and provider to find a common ground on clinical effectiveness and rational organization than about their own pre- management, and facilitates the integration of prevention and dicament. Each individual has his or her own way of experiencing health promotion in the therapeutic response [2,3]. Thus, person- and coping with health problems within their specific life circum- centredness becomes the ‘clinical method of participatory democ- stances [1]. Health workers have to be able to handle that diver- racy’ [5], measurably improving the quality of care particularly in sity. For health workers at the interface between the population the industrial world [2], has also been applicable in the developing and the health services, the challenge is much more complicated world [6,7], the success of treatment and the quality of life of those than for a specialized referral service: managing a well-defined benefiting from such care: improved treatment intensity and disease is a relatively straightforward technical challenge. quality of life [8]; better understanding of the psychological Dealing with health problems, however, is complicated as people aspects of a patient’s problems [9]; improved patient confidence need to be understood holistically: their physical, emotional and regarding sensitive problems [10]; increased trust and treatment social concerns, their past and their future, and the realities of the compliance [4]; better integration of preventive and promotive care world in which they live. Failure to deal with the whole person in [2]. their specific familial and community contexts misses out on In practice, clinicians rarely address their patients’ concerns, important aspects of health that do not immediately fit into beliefs and understanding of illness, and seldom share problem disease categories. management options with them [11]. They limit themselves to People want to know that their health worker understands them, simple technical prescriptions, ignoring the complex human their suffering and the constraints they face. Unfortunately, many dimensions that are critical to the appropriateness and effective- providers neglect this aspect of the therapeutic relation, particu- ness of the care they provide [12]. larly when they are dealing with disadvantaged groups. In many Thus, technical advice on lifestyle, treatment schedule or refer- health services, responsiveness and person-centredness are treated ral all too often neglects not only the constraints of the environ- as luxury goods to be handed out only to a selected few. ment in which people live, but also their potential for self-help in Over the last 30 years, a considerable body of research evidence dealing with a host of health problems ranging from diarrhoeal has shown that person-centredness is not only important to relieve disease [13] to diabetes management [14]. Yet, neither the nurse in the patient’s anxiety but also to improve the provider’s job satis- Niger’s rural health centre nor the general practitioner in Belgium faction [2]. The response to a health problem is more likely to be can, for example, refer a patient to hospital without negotiating effective if the provider understands its various dimensions [3]. [15,16]: along with medical criteria, they have to take into account For a start, simply asking patients how they feel about their illness, the patients’ values, the families’ values and their lifestyle and life how it affects their lives, rather than focusing only on the disease, perspective [17].

Few health providers have been trained for person-centred care. consultations in Bangkok. Tropical Medicine and International Lack of proper preparation is compounded by cross-cultural con- Health, 11, 81–89. flicts, social stratification, discrimination and stigma [16]. As a 8. Ferrer, R. L., Hambidge, S. J. & Maly, R. C. (2005) The essential role consequence, the considerable potential of people to contribute to of generalists in health care systems. Annals of Internal Medicine, 142, their own health through lifestyle, behaviour and self-care, and by 691–699. 9. Gulbrandsen, P., Hjortdahl, P. & Fugelli, P. (1997) General adapting professional advice optimally to their life circumstances practitioners’ knowledge of their patients’ psychosocial problems: is underutilized. The current payment systems and incentives in multipractice questionnaire survey. British Medical Journal,314, community health care delivery often work against establishing 1014–1018. this type of dialogue [18]. Conflicts of interest between provider 10. Kovess-Masféty, V., Saragoussi, D., Sevilla-Dedieu, C., Gilbert, F., and patient, particularly in unregulated commercial settings, are a Suchocka, A., Arveiller, N., Gasquet, I., Younes, N. & Hardy-Bayle, major disincentive to person-centred care. Commercial providers M. C. (2007) What makes people decide who to turn to when faced may be more courteous and client-friendly than in the average with a mental health problem? Results from a French survey. BMC health centre, but this is no substitute for person-centredness. Public Health, 7, 188. 11. Bergeson, D. (2006) A systems approach to patient-centred care. JAMA, 296, 23. References 12. Kravitz, R. L., Hays, R. D., Sherbourne, C. D., DiMatteo, M. R., Rogers, W. H., Ordway, L. & Greenfield, S. (1993) Recall of recom- 1. Starfield, B., Shi, L. & Macinko, J. (2005) Contributions of primary mendations and adherence to advice among patients with chronic care to health systems and 31. health. The Milbank Quarterly, 83, medical conditions. Archives of Internal Medicine, 153, 1869–1878. 457–502. 13. Werner, D., Sanders, D., Weston, J., Babb, S. & Rodriguez, B. (1997) 2. Mead, N. & Bower, P. (2000) Patient-centredness: a conceptual frame- Questioning the Solution: the Politics of Primary Health Care and work and review of the empirical literature. Social Science and Medi- Child Survival, with An in-Depth Critique of Oral Rehydration cine, 51, 1087–1110. Therapy. Palo Alto, CA: Health Wrights. 3. Stewart, M. (2001) Towards a global definition of patient centred care. 14. Norris, S. L., Nichols, P. J., Caspersen, C. J., et al. (2002) Increasing BMJ, 322, 444–445. diabetes self-management education in community settings. A system- 4. Fiscella, K., Meldrum, S., Franks, P., Shields, C. G., Duberstein, P., atic review. American Journal of Preventive Medicine, 22, 39–66. McDaniel, S. H. & Epstein, R. M. (2004) Patient trust: is it related to 15. Bossyns, P. & Van Lerberghe, W. (2004) The weakest link: compe- patient-centred behavior of primary care physicians? Medical Care, tence and prestige as constraints to referral by isolated nurses in rural 42, 1049–1055. Niger. Human Resources for Health,2,1. 5. Marincowitz, G. J. O. & Fehrsen, G. S. Caring, learning, improving 16. Willems, S., De Maesschalck, S., Deveugele, M., Derese, A. & De quality and doing research: Different faces of the same process. Paper Maeseneer, J. (2005) Socio-economic status of the patient and doctor- presented at: 11th South African Family Practice Congress, Sun City, patient communication: does it make a difference. Patient Eucation South Africa, August 1998. and Counseling, 56, 139–146. 6. Henbest, R. J. & Fehrsen, G. S. (1992) Patient centredness: is it 17. Pongsupap, Y. (2007) Introducing A Human Dimension to Thai Health applicable outside the west? Its measurement and effect on outcomes. Care: the Case for Family Practice. Brussels: Vrije Universiteit Brussel Family Practice, 9, 311–317. Press. 7. Pongsupap, Y. & Van Lerberghe, W. (2006) Choosing between 18. Pan American Health Organization (2007) Renewing Primary Health public and private or between hospital and primary care? Responsive- Care in the Americas. A Position Paper of the Pan American Health ness, patient-centeredness and prescribing patterns in out patient Organization. Washington DC: Pan American Health Organization.

From the Second Geneva Conference on Person Centered Medicine Person-Centered Medicine: From Concepts to Practice Bringing together values-based and evidence-based medicine: UK Department of Health Initiatives in the

‘Personalization’ of Carejep_1578 341..343 K. W. M. (Bill) Fulford DPhil (Oxon) FRCP FRCPsych

Fellow of St Cross College, University of Oxford, and Emeritus Professor of Philosophy and Mental Health, University of Warwick, Coventry, UK

Keywords Abstract evidence, involuntary treatment, mental health assessment, search strategies for Rationale Person-centred medicine depends on combining best research evidence with the values, service development, values unique values (including the preferences, concerns, needs and wishes) of individual patients and their families. Correspondence Aims and objectives The paper gives a brief introduction to values-based practice as a new Professor K. W. M. (Bill) Fulford approach to incorporating patients’ values into clinical decision making alongside best c/o Janet Smith, Room A-036 research evidence as derived from evidence-based practice. The University of Warwick Medical School Method The role of values-based practice as a partner to evidence-based practice is The University of Warwick illustrated through a series of policy, training and service development initiatives in mental Coventry CV4 7AL health from the UK Department of Health in London. England Results These initiatives have supported person-centred developments in key areas of UK mental health practice including, (1) the use of involuntary treatment; and (2) a shared E-mail: [email protected] approach of assessment. Early moves are underway to extend values-based practice to other areas of health care beyond mental health. For more information on values-based Conclusion Values-based practice offers a new approach to incorporating patients’ unique practice, please go to the Warwick Medical values into clinical decision making that is complementary to evidence-based practice as a School’s website http://www2.warwick. resource for person-centred medicine. ac.uk/fac/med/study/cpd/subject_index/ pemh/vbp_introduction

Accepted for publication: 11 October 2010 doi:10.1111/j.1365-2753.2010.01578.x

The traditional picture of a government department is perhaps of What is values-based practice? everyone avoiding headaches! It is thus particularly exciting that the UK government’s Department of Health has backed a whole series The starting point for values-based practice is the way in which of initiatives aimed at increasing what they are calling the ‘person- increasingly complex and often conﬂicting values are becoming alization’of care. Translated, this means nothing more nor less than ever more visible in health care. This is evident enough in ethics, a government-backed policy for ‘person-centred medicine’. of course, with ethical dilemmas in all areas of medicine. But This paper describes how bringing values-based and evidence- values are also increasingly evident in such areas as health eco- based approaches together is contributing to the development of nomic decisions, in the development of guidelines and in many person-centred medicine in the context of these Department of other areas. Health initiatives. The paper covers: A number of disciplines offer resources for working with 1 What values-based practice is. complex and conﬂicting values. The most widely recognized of 2 The relationship between values-based practice and evidence- these disciplines is ethics. But other important disciplines include based practice. the social sciences and the medical humanities, and also more 3 Some recent applications of values-based practice in mental quantitative disciplines such as decision analysis [1] and health health that are being developed through the Department of Health economics [2]. in London. Values-based practice, which is derived from philosophical 4 How values-based practice is now being extended from mental value theory [3], adds to the growing ‘toolkit’ for working with health into other areas of medicine. values a new and primarily skills-based approach to balanced

© 2010 Blackwell Publishing Ltd, Journal of Evaluation in Clinical Practice 17 (2011) 341–343 341 Values-based and evidence-based medicine K.W.M. (Bill) Fulford decision making where complex and conﬂicting values are involved. It is important to emphasize that word ‘skills’. The effectiveness of values-based practice in day-to-day clinical care depends very much on the fact that it builds on learnable clinical skills.

The relationship between values-based practice and evidence-based practice There is a close relationship between values-based practice and evidence-based practice. This close relationship is evident at a number of levels. First, values-based practice and evidence-based practice are both about process: they give us tools for answering questions rather than answers as such. Thus, evidence-based practice gives us practical tools for working more effectively with complex and conflicting Figure 1 Diagram from a training programme produced by the Depart- evidence. Correspondingly, values-based practice gives us practi- ment of Health showing its combined values-based and evidence-based cal tools for working more effectively with complex and conflict- resources. ing values. But the relationship between evidence-based practice and values-based practice goes much deeper. This deeper relationship support anyone working in mental health. The diagram in Fig. 1 is illustrated by the definition of evidence-based practice given by below, which was published in the 10 ESCs’ document, makes one of the founders of evidence-based practice [4]. Evidence- explicit the way in which the 10 ESCs build on the twin founda- based medicine is often thought of as being mainly about best tions of values-based practice working alongside and in partner- research evidence, and of course best research evidence certainly ship with evidence-based practice. is at the heart of evidence-based medicine. But properly understood, Sackett argues (p. 1), evidence-based medicine encompasses a good deal more. Again, it is about best research evidence, Policy but it is also about clinical experience and, crucially, patients’ values. A further application of values-based practice has been in the Sackett, furthermore, goes on to define values in a way that is training materials that have been developed by the Department of directly equivalent to how they are understood in values-based Health to support implementation of a revised Mental Health Act practice. ‘By patient values’, he says, ‘we mean the unique pref- [7]. This Act was one of the corner stones of the government’s erences, concerns and expectations each patient brings to a clinical mental health policy covering the use of compulsory treatment. encounter and which must be integrated into clinical decisions if Such treatment by its very nature involves conflicting values (the they are to serve the patient’ (p. 1) [4]. patient wants not to be treated, everyone else wants them to be treated) and values-based practice, building on a set of Guiding Principles in the Code of Practice supporting the Act [8], was the Practical applications of basis of training materials aimed at securing balanced use of the values-based practice provisions of the Act in practice (Care Services Improvement Partnership and the National Institute for Mental Health in Values-based practice is being applied in a number of initiatives England) [9,10]. through the Department of Health in London. These initiatives fall A second example of the policy applications of values-based into two main areas: practice has been to assessment in mental health, as set out in a • training guidance document, called the ‘3 Keys to a Shared Approach in • policy Mental Health Assessment’ [11]. The ‘3 Keys’ illustrates particularly clearly the importance of partnership as a feature of values- based practice. The whole document was a co-production between Training myself, as the Department of Health Lead for Values-Based Prac- A training manual [5], developed in a partnership between a major tice, and also a clinician and researcher, working closely with mental health non-governmental organization in London, The Laurie Bryant, as the Department Lead for Patients, and Lu Duhig, Sainsbury Centre for Mental Health and Warwick Medical School, as the Lead for Carers and Families. was launched by the Minister in the Department of Health at the Recently, there has been a whole series of new Department of time, Rosie Winterton. It is this manual that has subsequently Health policies aimed at increasing the extent to which services are become the basis for a series of Department of Health initiatives in responsive to the individual needs of patients and their families. values-based practice. These policies cover such areas as care planning (the Care Pro- One example of these initiatives is a programme called ‘The Ten gramme Approach), delivering race equality and social inclusion. Essential Shared Capabilities’ or ‘10 ESCs’ [6]. This set out the But the important point is the overall theme of increasing person- generic skills (i.e. the essential shared capabilities) required to alization, that is, of person-centred medicine.

From mental health into the rest century that is not only fully science-based but also genuinely of medicine person-centred. Building on these initiatives in mental health, the challenge now is to develop similar values-based approaches across medicine more References widely. 1 Hunink, M., Glasziou, P., Siegel, J., Weeks, J., Pliskin, J., Elstein, A. & I will not have time to go into this in detail. But, encouragingly, Weinstein, M. (2001) Decision Making in Health and Medicine: Inte- we have ‘policy headroom’ for this, at least in the UK, in the form grating Evidence and Values. Cambridge: Cambridge University Press. of a recently published Department of Health report that has been 2 Brown, M. M., Brown, G. C. & Sharma, S. (2005) Evidence-Based to adopted as the basis of health policy for the coming few years Value-Based Medicine. Chicago: American Medical Association Press. [12]. This report, which was produced under the leadership of a 3 Fulford, K. W. M. (1989) (reprinted 1995 and 1999) Moral Theory and surgeon, Lord Darzi, is all about person-centred medicine. Medical Practice. Cambridge: Cambridge University Press. 4 Sackett, D. L., Straus, S. E., Scott Richardson, W., Rosenberg, W. & There will be many challenges here! We need to develop new Haynes, R. B. (2000) Evidence-Based Medicine: How to Practice and educational methods and new structural and policy supports, and Teach EBM, 2nd edn Edinburgh and London: Churchill Livingstone. we need to find ways of integrating values-based processes into 5 Woodbridge, K. & Fulford, K. W. M. (2004) ‘Whose Values?’A Work- clinical trials methodologies and into clinical guideline produc- book for Values-Based Practice in Mental Health Care. London: The tion. A key challenge for the latter will be the development of Sainsbury Centre for Mental Health. effective literature search tools. 6 Department of Health (2004) (40339) The Ten Essential Shared Capa- Warwick Medical School, which as noted earlier spearheaded bilities: A Framework for the Whole of the Mental Health Workforce. the development of training methods for values-based practice in London: The Sainsbury Centre for Mental Health, the NHSU (National mental health, has again taken the lead here with a number of Health Service University), and the NIMHE (National Institute for teaching and other initiatives. These initiatives include the devel- Mental Health England). 7 Department of Health (2007) Mental Health Act 2007. London: opment of a manual (by one of my postgraduate students, Mila Department of Health. Petrova) that draws together findings on how to search for health- 8 Department of Health (2008) Code of Practice: Mental Health Act related values in electronic databases. We have also recently 1983. London: Department of Health. signed a contract with Cambridge University Press for a book 9 Care Services Improvement Partnership (CSIP) and the National Insti- series on values-based medicine. tute for Mental Health in England (NIMHE) (2008) Workbook to Support Implementation of the Mental Health Act 1983 As Amended by the Mental Health Act 2007. London: Department of Health. Conclusions 10 Fulford, K. W. M., King, M. & Dewey, S. (2010) Values Based Practice Values-based practice is a new skills-based approach to working and Involuntary Treatment: A New Training Programme in the UK. with complex and conflicting values that, working in partnership Advances in Psychiatric Treatment. Geneva: World Psychiatric Association. with evidence-based practice, has been successfully rolled out 11 The National Institute for Mental Health in England (NIMHE) and the through a number of training and policy initiatives in mental Care Services Improvement Partnership (2008) 3 Keys to A Shared health through the UK government’s Department of Health. Approach in Mental Health Assessment. London: Department of The development of similar values-based and evidence-based Health. approaches across health care as a whole could make an impor- 12 Department of Health (2008) High Quality Care For All: NHS Next tant contribution to the development of a medicine for the 21st Stage Review Final Report. London: Department of Health. (CM 7432).

From the Second Geneva Conference on Person Centered Medicine Person-Centered Medicine: From Concepts to Practice European Federation of Associations of Families of People

with Mental Illness initiatives on person-centred carejep_1579 344..346 Sigrid Steffen

President, EUFAMI, EUFAMI, Leuven, Belgium

Keywords Abstract empowerment, EUFAMI, family, partnership, prospect, training, trialogue Rationale European Federation of Associations of Families of People with Mental Illness is working towards the goal of shifting the emphasis of care for people with metal illness Correspondence from the treatment of the symptoms to a more holistic approach of treating the whole Sigrid Steffen person – in other words ‘person-centred care’. It is also working with the Geneva confer- Verein AhA ence on person-centred medicine and various interested groupings and organizations to Lessingstrabe6 ensure that the role of the family is fully recognized and supported. 5020 Salzburg Method By engaging primarily with the medical community in bringing to fruition certain Austria initiatives which European Federation of Associations of Families of People with Mental E-mail: [email protected] Illness considers as important to the success of person-centred care. Results To date, no formal reviews have taken place and feedback from the initiatives has Accepted for publication: 11 October 2010 been informal and anecdotal. Conclusion Early reports from the various initiatives are positive. But they also indicate doi:10.1111/j.1365-2753.2010.01579.x that there is still much work to be done in order for the concept to become a reality across the majority of European countries.

At the outset, I would like to introduce our organization to those The Federation works with partners and stakeholders in the who may not be familiar with it. EUFAMI is the European Fed- public and private sectors that share its concerns and beliefs and eration of Associations of Families of People with Mental Illness together seeks solutions for mental health issues, furthering better (http://www.eufami.org). It is the representative body for family- quality of care and welfare for people with a mental illness and run voluntary organizations across Europe, which promotes the support for their family and friends. interests and well-being of all people affected by severe mental In order to fully consider ‘person-centred’ care, it is essential illness. It was founded in 1992 and has 48 member associations that a common understanding be first established and that certain from 28 European countries. central characteristics are identified – for instance, all parties must European Federation of Associations of Families of People be involved, true partnership is essential and that there is a culture with Mental Illness campaigns on behalf of many millions of mutual respect and that services are integrated. of people across Europe affected by severe mental illness. It aims It should also encompass principles as to represent their concerns in the European institutions such as • taking into account the patient’s preferences, needs and the European Union Commission and the European Parliament, environment; the World Health Organization and other European and interna- • adopting an individual approach; tional forums and bodies, including many professional medical • developing a partnership with patients and their families; bodies, such as the World Psychiatric Association as just one • ensuring continuity of care, which must involve engaging the example. family; European Federation of Associations of Families of People with • treating the patient as a person and not merely treating the Mental Illness believes that families/carers must be acknowledged symptoms. as equal partners alongside professionals supporting patients and Families can become empowered through ‘person-centred’ care recognizes that families/carers need support in their own right and and a sense of commitment and a feeling of being valued can be have many unmet support needs that must be respected and rec- achieved. Family involvement can help to reduce stress (by listen- ognized. Additionally, EUFAMI believes that all patients with ing and giving space to ‘chill out’ or ‘let steam off’), help to mental illness have the right to appropriate social care and health establish a regular routine and encourage adherence to the care care services and that all people affected by severe mental illness plan and to medication. have the right to share in the opportunities, responsibilities and The role which families play is a most important one when fulfilment of everyday life. one takes into consideration what family members do – such as

344 © 2010 Blackwell Publishing Ltd, Journal of Evaluation in Clinical Practice 17 (2011) 344–346 S. Steffen EUFAMI initiatives on person-centred care providing help when necessary while respecting the wish and need strength through working together at both individual and organi- of the patients to help themselves. On many occasions, they are the zational levels. only social contact for the people with a mental illness; family members can also recognize the healthy aspects and their skills A new approach to in addition to seeing the illness. Families can still maintain the professional training trust and confidence of the patient, even if his or her attitude is unpleasant. With regard to current training and training methods for psychia- Their contribution must be acknowledged appropriately and try, EUFAMI contends that a major seed change is required to they should have the right and opportunity to state their needs and ensure that the emphasis is placed more on the patient rather than to define the role they are willing and able to play. In respect on the illness and second that ‘family training’ is recognized as to support for the family, quality information to help understand part of the official training curriculum. the illness and education to help develop one’s coping skills is Relatives have gained a great deal of experience and have much urgently required. to teach the medical community. Their expertise should be I will refer to three examples of initiatives in which EUFAMI acknowledged and valued. Families should be involved in edu- members are participating in their quest to have the focus shifted cation and training of medical staff working in mental health more on the patient. These include: services. Involvement of carers in mental health training is a beneficial development for patients and professionals, but one that Empowerment and information requires further work. We are aware that family members are becoming involved, A few years ago, EUFAMI along with a number of its member albeit on an informal basis, with professional training in a number associations embarked on a unique project programme to help of countries, such as the UK and Germany. From the limited families become self-empowered. This resulted in the develop- amount of feedback we have received, it is becoming clear that ment of PROSPECT – a very unique peer-to-peer training method mental health professionals are acquiring a more positive attitude which would be delivered by family members. towards families; they use less jargon and are becoming more Drawing on best practice within the PROSPECT partnership optimistic about patients’ recovery. Families and carers, on the and EUFAMI’s network, the aim of the PROSPECT training pro- other hand, feel more empowered, have a better relationship with gramme is to support recovery from mental illness and promote mental health professionals and enjoy far more personal satisfac- inclusion in the community for people with self-experience of tion and improved quality of life. It is clear that attitudes will mental illness (patients), their family and their carers. It trains and dramatically change and that everyone will benefit – especially the educates participants to develop their skills and competencies to person with the mental illness, as the barriers begin to come down. create new opportunities for social integration and employment. EUFAMI contends that this type of initiative should be imple- In addition, it seeks to sensitize social and health professionals to mented on a wider geographic spread and on a formal basis. new approaches. New modules need to be introduced to cover human aspects PROSPECT training programmes have a number of flexible, related to the patient and family. In the long run, the participation of integrated modules which include modules for professionals and all interested parties in the care team will evolve and will result in a patients, in addition to the modules for family members. Each better and easier life for all concerned – the patient will feel more module is led by a facilitator drawn from the target group; for involved and take ownership; the medical profession will feel more example, a family member facilitates the modules for families. relaxed and life will be easier as there will be more dialogue; the There is also a common module which embraces all three groups. family member will feel valued and a reduction in isolation. PROSPECT has now been successfully used in over 14 European A change in the current care environment is badly needed in countries and continues to primarily help our members in their order to move from the long-term hospital model to a more accept- mission to promote the objective of total care, which involves all able care model centred within the community environment. The parties. new module should include psychiatric departments within regional hospitals in place of the large psychiatric clinics that Trialogue currently operate. A more holistic model is needed which should address all aspects of a patient’s health; empowerment and recov- This second initiative, known as Trialogue, is addressing issues ery brings new responsibilities to all parties and the roles of clini- around communication. Traditionally, interactions and communi- cians, patients, carers require updating. cation occur only between the patient and the professional or European Federation of Associations of Families of People with between the patient and his or her carer. However, this results in Mental Illness is leading the campaign to ensure that the voice of a communication gap between the health professional and family families is recognized and is listened to so that the vast knowledge members. This gap can only be bridged by speaking with one base and experience which families have built up from years of voice, in a spirit of cooperation. The Trialogue model – a three- caring and living with mental illness on a ‘round-the-clock’ basis way discussion between service users, professionals and family is available for sharing by all of the care team. This is a prime members – is being used in a number of countries in a flexible reason why families are officially as an integral part of the primary way to address specific issues for individual patients and their care team. family carers. It is the strong belief of EUFAMI that the Tria- It is very clear that the manner in which families and medical logue model does work and is the solution to many issues around professionals approach life and issues is very different – families the communication gap. EUFAMI can provide examples of tend to be impatient and thus approach issues in a very pragmatic

© 2010 Blackwell Publishing Ltd 345 EUFAMI initiatives on person-centred care S. Steffen way, whereas professionals view an issue from evidence-based Ultimately, we all want good services, support, information, perspective. EUFAMI appreciates the difference and recognizes advice, training and advocacy and an end to stigma and discrimi- an ever-increasing body of evidence based on many initiatives and nation. This can only be achieved by putting the patient at the greater awareness in this area. centre of the system.

From the Second Geneva Conference on Person Centered Medicine Person-Centered Medicine: From Concepts to Practice

The person in health care policy developmentjep_1588 347..349 Janet Wallcraft PhD

Honorary Fellow, University of Birmingham, Birmingham, UK

Keywords Abstract empowerment, health care policy, participation, patient involvement, Objective The objective of this article is to explore the rationale for involvement of persons person-centred care, service user in health care policy in western countries, and to examine evidence of the difference public involvement involvement can make. Methods The information is drawn from research and reports on changes in health care Correspondece policy towards greater democratization of decision making. Dr Janet Wallcraft Conclusions Strong reasons have been put forward for wider public involvement in health Centre of Excellence in Interdisciplinary care policy, and some evidence is now available that involvement is popular with stake- Mental Health holders and can improve services, though it is a complex intervention needing complex University of Birmingham strategies of evaluation. Birmingham, UK http://www.ceimh.bham.ac.uk E-mail: [email protected]

Accepted for publication: 11 October 2010 doi:10.1111/j.1365-2753.2010.01588.x

Why involve the person in organized around identity, ecology, peace and eventually around health care policy? health issues. Disabled people, service users, patients and carers formed associations to press for more rights, choice and empowerment in health policy. Historical and sociological reasons Health care policy has been seen as problematic by many members Philosophical and ethical reasons of society; although during the first half of the 20th century patients were grateful (or were expected to be grateful) for the care The philosophy of science as it applies to medicine is a crucial they received, and rarely formed a lobby for change. Patients of element in health care policy changes. As 19th and 20th centuries psychiatry were particularly disempowered by their legal status as medicine became increasingly reliant on technology, so an increas- well as their actual problems and the stigma ascribed to their ing number of doctors felt themselves disempowered in their condition. medical decision making. Science was expected to answer all the Health care in most western countries is characterized by questions, yet laboratory tests are not always sufficiently exact; inequality in health according to social class [1]. There is also and progress measured by numbers and graphs does not answer usually an allocation of resources that is biased towards the quality questions about illness and wellness. wealthier classes, which Tudor Hart [2] termed the ‘inverse care Evidence-based medicine as advocated in the 21st century is law’, that is, that those people in the worst health receive the least still based on a positivist belief that all questions can be referred to services. an exact science, or at least to the best available accumulated In addition, the allocation of resources has been concentrated on scientific and technical knowledge, rather than to the doctor’s own hospitals, despite the fact that most illness is treated by local knowledge and experience or a combination of observation, doctors. examination, history taking and the patient’s own perspectives on Health care policy therefore came under criticism in the latter what is wrong. part of the 20th century from people who need services, their Advocates of history-taking argue, basically, that while instru- friends and relatives, as well as from many health care workers and ments and the senses may reveal crucial facts about the causes researchers. of disease, only the patient can reveal how the illness affects The tendency for health care political lobbies to be formed was him’ [4] fed by social change in this period. The crisis in industrial culture In the late 20th century there were a growing number of critics led to new social movements [3] no longer based primarily on of overdependence on scientific medicine. Some used a economic concerns such as wages and working conditions. People philosophical/ethical critique of the direction of biomedical

© 2010 Blackwell Publishing Ltd, Journal of Evaluation in Clinical Practice 17 (2011) 347–349 347 Person-centred health policy J. Wallcraft science, arguing for a more negotiated social perspective on health sense of personal control and an interest in social, political and care needs. These included philosophers of science such as Capra legal participation. He argued that moving from ‘helpee to helper’ [5], who argued: can be empowering. He suggests that organizations with an ideol- Medical problems are reduced to molecular phenomena with ogy of empowerment are more successful at finding and develop- the aim of finding a mechanism that is central to the problem. ing resources than those with traditional power structures, as Once this mechanism is understood, it is counteracted by a ‘empowerment is not a scarce resource that gets used up’. drug that is often isolated from another organic process whose Mental health service users have further defined empowerment ‘active principle’ it is said to represent. By reducing biological as a concept including self-esteem, power, activism, optimism and functions to molecular mechanisms and active principles in righteous anger [9]. this way, biomedical researchers necessarily limit themselves The pharmaceutical industry [10] is aware that empowered to partial aspects of the phenomena they study...allaspects patients can influence health care outcomes in terms of ‘access to that go beyond this view are considered irrelevant, as far as drugs, reimbursement policies, approval of new drugs, clinical trial the disorders are concerned, and are listed as ‘side effects’ in recruitment, patient compliance and prescription rates’. However, the case of the remedies. pp. 129–130 they are also concerned that empowerment may lead to a reduction Universities participated keenly in these debates about philosophy in drug prices and negative publicity for the pharmaceutical indus- and ethics of medicine, and the work of academics was eventually try, and advocate effort in harnessing (controlling and directing) reflected in the arena of public involvement in health care policy. patient power through working with patient advocacy groups, Many consumers of health care began to argue for a more quali- where legal restrictions allow. tative and negotiated approach to health care. Even in the case of A WHO (2006) report demonstrates that empowering initiatives clearly measurable diseases such as cancer this approach was seen can lead to valued health outcomes and that empowerment is a as important to coexist with continued biological research. In more viable public health strategy, although they argue that empower- contested areas such as mental health the arguments for qualitative ment is a complex strategy that is difficult to evaluate. [11] approaches have been even stronger. Benefits of genuine public involvement Decision-making theory in health care Social and philosophical debates about the problems of techno- An article in the British Medical Journal [12] states that paternal- logically dominated decision making were one form of influence ism in health care is outdated: on politicians in the later part of the 20th century causing them to Benign and well intentioned [paternalism] may be, but it has seek greater public involvement in health care and social policy. the effect of creating and maintaining an unhealthy depen- Decision theory is often concerned with how to make decisions dency which is out of step with other currents in society. that are difficult because of their complexity, or because the out- Assumptions that doctor (or nurse) knows best, making deci- comes of courses of action cannot be accurately predicted. sions on behalf of patients without involving them and feeling In the health care area, decisions are often complex and are threatened when patients have access to alternative sources of often based on information that is fundamentally ambiguous and medical information – these signs of paternalism should have multifaceted: no place in modern health care [12] Uncertainty can be resolved in principle by more cognitive The benefits and potential benefits of power-sharing with patients advances....[but]ambiguity only by discourse. Discursive are driving current research on patient participation in health care procedures include legal deliberations as well as novel partici- decisions. In Quebec [13] a literature review and action research patory approaches. In addition, discursive methods of plan- project is seeking to increase participation in Health Technology ning and conflict resolution can be used. If ambiguities are Assessment (HTA) processes. associated with a risk problem, it is not enough to demon- The researchers say: strate that risk regulators are open to public concerns and Given the actual state of evidence, integrating patient perspec- address the issues that many people wish them to take care of. tive in HTA activities has the potential to improve the quality The process of risk evaluation itself needs to be open to of healthcare services. This study provides an opportunity to public input and new forms of deliberation. [6] bridge the gap between HTA producers and its ultimate end- Thus, governments have concluded that techniques such as Delphi, user: the patient. It will provide guidance to support local qualitative surveys and stakeholder involvement can lead to wiser, HTA units in Quebec and elsewhere in their decisions regard- more humane, or at least, more firmly grounded, shared and ing patient participation [13]. acceptable public health care policies. Examples of changes because of public Scientific research basis for involvement in health care power-sharing in health One example of the benefits of power-sharing between profes- Some research suggests that empowerment of patients and com- sional health care workers and service users will serve as typical. munities leads in itself to better health outcomes and reduced A study of involvement of patients in diabetes research [14] found: hospital costs [7]. Rappaport [8] defined empowerment as indi- Users contribute by changing the researchers’ mind-sets, thus vidual determination over one’s own life and democratic partici- increasing their confidence in the relevance of this research. pation in the life of one’s community, along with a psychological Proposals are, from the very beginning, drafted with the users

in mind. Researchers also view their interaction with the management: risk-based, precaution-based, and discourse-based group as essential for conducting research that is feasible in strategies. Risk Analysis, 22, 1071–1094. practice. 7. Melnyk, B. M. & Feinstein, N. F. (2009) Reducing hospital expendi- They found that the impact stems from the continuing interaction tures with the COPE (Creating Opportunities for Parent Empower- between researchers and users, and the general ethos of learning ment) program for parents and premature infants: an analysis of direct healthcare neonatal intensive care unit costs and savings. Nursing from each other in an on-going process. Administration Quarterly, 33 (1), 32–37. Randomized controlled trials looking specifically at the impact 8. Rappaport, J. (1987) Terms of empowerment/exemplars of prevention: of consumer involvement in health care policy are so far inconclu- towards a theory for community psychology. American Journal of sive according to a recent Cochrane review [15], finding only that Community Psychology, 15, 121–144. involving consumers can produce more relevant, readable and 9. Rogers, E. S., Chamberlin, J., Ellison, M. L. & Crean, T. (1997) A understandable patient information material, which can improve consumer-constructed scale to measure empowerment among users of knowledge. mental health services. Psychiatric Services, 48, 1042–1047. However, the generally accepted view is that shared decision 10. Datamonitor (July 2007) Patient Empowerment: empowered patients making can be effective, and is popular with patients, service can change healthcare outcomes and impact the pharmaceutical industry users, families and carers as well as medical and health care . Available at: http://www.researchandmarkets.com/ reportinfo.asp?report_id=545617 (last accessed 3 November 2010). workers in all fields. In the longer term it could lead to more 11. WHO Health Education Network (2006) What is the evidence on responsible citizenship where people make better health choices effectiveness of empowerment to improve health? Report. and learn to care for themselves and those around them. 12. Coulter, A. (1999) Paternalism or partnership? Patients have grown up-and there’s no going back. BMJ, 319 (7212), 719–720. 13. Gagnon, M. P., Lepage-Savary, D., Gagnon, J., St-Pierre, M., Simard, References C., Rhainds, M., Lemieux, R., Desmartis, M., Gauvin, F. P. & Legare, F. (2009) Introducing patient perspective in health technology assess- 1. Townsend, P., Davidson, N. & Whitehead, M. (eds) (1992) The ment at the local level. BMC Health Services Research, 9 (1), 54. Black Report and the Health Divide: Inequalities in Health, 2nd edn. 14. Lindenmayer, A., Hearnshaw, H., Sturt, J., Ormerod, R. & Aitchison, London: Penguin. G. (2007) Assessment of the benefits of user involvement in health 2. Tudor Hart, J. (1971) The inverse care law. Lancet, 1, 405–412. research – Warwick Diabetes Care Research User Group. Health 3. Buechler, S. (1999) Social Movements in Advanced Capitalism. Expectations, 10 (3), 268–277. Oxford: Oxford University Press. 15. Nilsen, E. S., Myrhaug, H. T., Johansen, M., Oliver, S. & Oxman, 4. Reiser, S. J. (1978) Medicine and the Reign of Technology. A. D. (2006) Methods of consumer involvement in developing health- Cambridge: Cambridge University Press. care policy and research, clinical practice guidelines and patient infor- 5. Capra, F. (1983) The Turning Point. London: Flamingo. mation material. Cochrane Database of Systematic Reviews, Issue 3. 6. Klinke, A. & Renn, O. (2002) A new approach to risk evaluation and Art. No.: CD004563. DOI: 10.1002/14651858.CD004563.pub2.

From the Second Geneva Conference on Person Centered Medicine Person-Centered Medicine: From Concepts to Practice Empathy, identity and engagement in person-centred

medicine: the sociocultural contextjep_1580 350..353 John L. Cox DM (Oxon) FRCPsych FRCP

Immediate Past Secretary General, World Psychiatric Association, Geneva, Switzerland, Professor Emeritus, University of Keele, North Staffordshire, UK and Visiting professor, University of Gloucestershire, Cheltenham, UK

Keywords Abstract biopsychosocial model, body-mind-spirit paradigm, cultural psychiatry, doctor–patient Aims This paper considers in outline the complexity of the empathic process from sub- relationship, identity, mental health, jective, philosophical and psychological perspectives, and suggests that compassionate person-centred medicine empathy is a core requirement of a person-centred approach to health care delivery. Empathy is facilitated by secure attachments in infancy (intersubjectivity) and a subsequent Correspondence ﬁrm sense of self and personal identity. Empathic understanding is enhanced by the medical Professor John L. Cox humanities, but the neglect of musical appreciation in this regard is surprising. Centre for the Study of Faith, Science and Conclusions The biopsychosocial model is reviewed, and a body-mind-spirit paradigm is Values in Health Care proposed as a more optimal framework for health care delivery in a multicultural society. University of Gloucestershire Oxstalls Campus Oxstalls Lane Longlevens Gloucester GL2 9HW UK E-mail: [email protected]

Accepted for publication: 11 October 2010 doi:10.1111/j.1365-2753.2010.01580.x

I see it fleetingly....look with thine ears Empathy King Lear IV, VI, 150 Rogers regarded accurate empathy, genuineness and non- Introduction possessive warmth as key components of humanistic counselling. It is suggested in this paper that empathic understanding is also The initiative of the World Psychiatric Association, the World central to the provision of all person-centred, relationship-based Medical Association, World Association of Family Doctors and health care. other international organizations to convene the 2009 Geneva The psychological and philosophical understanding as to conference on person-centred medicine was timely. New holistic how empathic ‘judgement’ about another person’s subjective conceptual models of health and illness, and a review of the biop- world is made, include psychoanalytic concepts of transference sychosocial model, were required for the provision of health care and projective identification [3], as well as ‘Simulation theory’ in a changing sociocultural context. [4] and the ‘Theory–Theory’ of cognitive psychology [5], Globalization, increased migration and economic recession whereby knowledge of another’s mind can only be theoretical are impacting on the core containers of culture – religious under- and not experiential. How empathic capacity is acquired whether standing, language acquisition and the structure of families. in infancy from the experience of intersubjectivity [6] with a Increased individualism and shorter-term relationships in the sensitive caregiver or later through sensitivity training or the UK, for example, may adversely affect the ability to be ‘good teaching of medical humanities, are key research questions in enough’ parents [1]. Multi-faith communities have catapulted this field. renewed interest in exploring the boundaries of religion, spiritu- Karl Jaspers [7], psychiatrist and philosopher, gave particular ality and mental health [2] to an extent not anticipated a decade emphasis to the role of fellow feeling and hence to the simu- ago. lation of moods and feeling states, on the basis of which

350 © 2011 Blackwell Publishing Ltd, Journal of Evaluation in Clinical Practice 17 (2011) 350–353 J.L. Cox Empathy and a body-mind-spirit paradigm intentionality and behaviour of the other might be predicted. Identity and personhood Likewise, he emphasized the value of ‘understanding’ (Verste- hen) of another’s experience, in contrast with explanation, and ‘Identity’ is a term used in the Social Sciences to describe a sense showed that subjectivity can only be understood through the of self as a separate entity. According to Erikson’s staged theory of process of empathizing: human development [17], this sense of personhood is achieved by Subjective symptoms cannot be perceived by the sense the inculcation of Basic Trust in the growing infant. The ability to organs, but have to be grasped by transferring oneself, so to relate confidently to others arises out of the early experience of say, into the other individual’s psyche; that is by empathy. Secure Attachment to the caregiver in infancy [18]. It is therefore They can only become an inner reality for the observer by his contingent on the ability of the caregiver to have sufficient participating in the other person’s experiences, not by intel- empathic capacity to introduce the infant to the external world, and lectual effort. [8] to facilitate the mentalizing processes necessary for human brain This capacity for accurate and compassionate empathy is thus development. Thus, empathy is not just entering and sharing the partly contingent on the subjective experiences of the observer – feelings of the other, but it is also the capacity to look out with the the extent to which he or she has experienced the emotions being other and to see the world as he/she sees it [19]. imputed to the other. The doctor, for example, who has not grieved Thus, for a person-centred medicine, the doctor (or other health cannot fully simulate (empathize with) a grieving patient [9] – professional) will benefit by having a firm enough sense of his/her although during the process of therapy the practitioner will learn own professional, cultural and social identity, which will facilitate more about the range of feelings and behaviours that may charac- the therapeutic relationships with service users who seek help. For terize this state of mind. some professionals, an anchoring in a religious faith tradition or The accuracy of this empathic process with patients is never- another existential worldview is an advantage, especially when theless often difficult for health professionals to attain, especially working in high-stress specialties, such as Forensic Psychotherapy when working with patients from communities that are them- [20], Intensive or Palliative Care [21], when the demands made on selves undergoing rapid transition or when the way in which the person are continuous and at times daunting. health care is delivered is itself in transition. Any lack of shared Gilbert [22] has discussed further these existential, social, psy- assumptions or values can result in demoralization and deperson- chological and theological components of the Personal and Social alization of both the health care professional and the patient Self and illustrates them in his figure of a diamond of ‘Self and [10]. Others’. It is to assist with anticipating and overcoming these The South African psychiatrist and philosopher van Staden [23] difficulties of empathic understanding that the teaching of regards psychiatry as a discipline primarily concerned with ‘medical humanities’ in medical schools is commonly justified patients as persons. Meaningful philosophical constructs (such as [11]. The appreciation of poetry, of the visual arts and of brain or body) are ‘extricates’ from persons – and not vice versa. drama can each enhance the understanding of the human condi- The whole patient, rather than a mind or a body, is therefore tion and sensitize doctors to their own emotional responses. logically and historically at the centre of psychiatric practice; the It has been suggested by Green [12], for example, that an person is regarded as being primary in relation to its ‘contributory empathic process establishes the emotional response to a paint- subjects’, such as biology, psychology and sociology. ing and the ‘relationship’ with its sentiment and the creativity of Drawing on the work of Husserl and Merlau-Ponty, Eric Mat- the artist. thews [24] has summarized his reasons for replacing Cartesian Likewise, the response of the listener and the performer to a dualism with Merlau-Ponty’s conception of human beings as composer’s music is also an empathic process, which requires the body-subjects in the following way: mirroring of emotional expression and the activity of complex The mind then is not thought of, as in Dualism, as a thing, neuronal circuits involving the auditory pathways, the amygdala which constitutes one part of a human being. Rather human and the reverberating circuits involved with emotion-laden memo- beings are thought of as wholes, which exist in the world, and ries [13]. This teaching of music appreciation is however rarely whose bodies (including their brains) are experienced as their included in medical humanities curricula, even in intercalated means of existing in the world. Bachelor programmes [14], and there is no clear explanation for this neglect at the present time. Interestingly, the musicologist Anthony Hopkins [15] has aptly pointed out that, unlike a poem or Person-centred medicine and a a painting, music is an art form that is constantly renewed and medicine of the person revitalized as it is performed and cannot so readily be put in a cupboard or taken home. These are practical considerations that Person-centred approaches to health care are commonly advocated the teacher of medical humanities would have to take into account, by User and Carer groups across the world, and promoted in policy as well as the possibility that the medical student may have had papers, such as ‘Shared Decision Making’ [25], which emphasized little exposure to musical appreciation before – or may be tone the partnership between doctor and patient, and the Kings Fund deaf. report [26], ‘Seeing the person in the patient’. Nevertheless, developing the capacity for compassionate Thus, patient-centred medicine or medicine of the person empathy, whether through the teaching of the medical humanities [27,28] has broad policy as well as clinical components, which or from supervision or personal experience, is necessary for include regarding the patient as person, biopsychosocial perspec- optimal communication with the patient and for enabling the tives, sharing power and responsibility, therapeutic alliance and patient to feel understood and ‘listened to’ [16]. the doctor as person [29].

The biopsychosocial model Body-mind-spirit paradigm The biopsychosocial model [30] of George Engel has exerted a Considering the changes in the philosophy of science, and in wide influence on medical practice in general, and was a bridge particular the increased understanding of Tacit knowledge [33] and between the schools of Psychoanalysis and Biological Psychiatry of the need for existential meaning making [34] in secular society, in the USA in the 1970s. It was conceived as a scientific, rather a body-mind-spirit paradigm may be a more useful integrative than a values, framework that would hold together the biolo- framework for contemporary health care provision. This interlock- gical and psychological sciences. The model has nevertheless ing whole person system would include, for example, ‘spirit’ in the provided a framework for the emerging desire for greater multi- sense of meaning and purpose, as well as the ‘intentionality’ of the professional collaboration and for increased consideration of the body. This paradigm, which is derived fundamentally from the full perspectives of service users. It also provided an integrative focus understanding of the personhood of the individual in relationship for those who recognized the conceptual limitations of a medical with others, can not conceptually be taken apart without violating practice based on biomedicine alone – even when this was the the understanding of the whole person. dominant explanatory model of the time. George Engel described how psychiatrists were saying at that time when they had ‘strayed from medicine and the medical model – so please take us back’. Conclusion But he understood that medicine itself was changing, and that a This paper has outlined the impact of current sociocultural narrow biomedical model was no longer adequate for the scientific changes on the individual and on the presentation of distress. It is and social responsibilities of medicine as a whole and psychiatry suggested that these upheavals affect internal medicine, family in particular. practice and psychiatry equally. Optimal medical practice, it is Engel also recognized the importance of the historical split suggested, is a relationship-based medicine of the person, which between mind and body in Western medicine, with the church and incorporates meaning and purpose (spirit) as well as science and social institutions being responsible for the mind, and the doctor psychology, and so is truly integrative. for the body. As a Consultation/Liaison psychiatrist, he noted that This approach is derived from the ‘person’, with brain and mind considering the behavioural and social aspects of a patient with as ‘extricates’. Relationships between health professionals and diabetes was comparable to the holistic management of a patient patients are ‘compassionate’ when they are influenced by empathy with schizophrenia. Thus, the requirements of any new model at and altruism. It is suggested that these virtues and values can be that time would include the consideration of the disease/illness enhanced by the teaching of the Medical Humanities (including dichotomy and the understanding of the ‘meaning’ of a patient’s musical appreciation), by increasing the sensitivity to personal narrative. narratives and to greater understanding of a values-based approach. Using anthropological references, the psychological and social It is suggested that a body-mind-spirit paradigm, which includes factors were commonly determinants of a patient with a biochemi- meaning and purpose as well as contemporary understandings of cal abnormality becoming ‘sick’. Engel aptly noted that the behav- spirituality, is a useful framework for considering the complexity iour of the doctor and the relationship between doctor and patient of person-centred care at times of marked existential uncertainty. would both influence therapeutic outcome – for better or worse. It was in this context that he put forward his biopsychosocial model, which was supported by General Systems Theory. References This model was however not described in greater detail, and George Engel did not refer to the conceptual and philosophical 1. Layard, R. & Dunn, J. (2009) A Good Childhood: Searching for dilemmas at the brain/mind interface, nor did he suggest opera- Values in a Competitive Age. London: Penguin Books. tional measures necessary to determine whether or not the model 2. Verhagen, P. J. & Cox, J. L. (2010) Multicultural education and train- had been implemented. There was no indication as to how the ing in religion and spirituality. In Religion and Psychiatry: Beyond model worked, or of any evidence that it worked. It remained Boundaries (eds P. J. Verhagen, H. M. van Praag, J. Lopez-Ibor, J. L. Cox & D. Moussaoui), pp. 587–615. Oxford: Wiley-Blackwell. unclear whether it was intended as an explanatory model of 3. Sandler, J., Dare, C. & Holder, A. (1992) The Patient and the Analyst: disease or an optimal approach to medical care. The Basis of the Psychoanalytic Process. London: Karnac Books. The biopsychosocial model has encouraged a constructive 4. Gordon, R. M. (1992) The Simulation Theory: objections and miscon- eclecticism, but it has not provided a rigorous scientific or values- ceptions. 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(2009) Philo- reductionism of research method could later be reintegrated into gophical perspectives on health, illness and clinical judgement in a more holistic understanding. Other writers [32] have noted psychiatry and medicine. In Psychiatric Diagnosis: Challenges and the lack of the spiritual/religious dimension in the model and Prospects (eds I. M. Salloum & J. E. Mezzich), pp. 15–27. Oxford: have suggested that a biosocial/psychospiritual approach for a Wiley. relationship-based health care could more readily incorporate 8. Jaspers, K. (1968) The phenomenological approach in psychopathol- this existential perspective. ogy (1912). British Journal of Psychiatry, 114, 1313–1323.

9. Bolton, D. & Hill, J. (1996) Mind, Meaning and Mental Disorder: The people’s lives today. In Spirituality, Values and Mental Health: Jewels Nature of Causal Explanation in Psychology and Psychiatry. Oxford: for the Journey (eds M. E. Coyte, P. Gilbert & V. Nicholls), pp. 19–44. Oxford University Press. London: Jessica Kingsley. 10. Watt, I., Nettleton, S. & Burrows, R. (2008) The views of doctors on 23. Van Staden, C. W. (2006) Mind, brain and person: reviewing psychia- their working lives: a qualitative study. Journal of Royal Society of try’s constitiuency. South African Psychiatry Review, 9, 93–96. Medicine, 101, 592–597. 24. Matthews, E. (2007) Body-Subjects and Disordered Minds: Treating 11. Kirklin, D. & Richardson, R. (2001) Medical Humanities: A Practical the Whole Person in Psychiatry. Oxford: Oxford University Press. Introduction. London: The Royal College of Physicians. 25. Department of Health (2004) The Ten Essential Shared Capabilities; 12. Green, J. (2009) Form and mental state: an interpersonal approach to A Framework for the Whole of the Mental Health Workforce. London: painting. Advances in Psychiatric Treatment, 15, 137–145. The Sainsbury Centre for Mental Health. 13. Warren, J. (2008) How does the brain process music? Clinical Medi- 26. Goodrich, J. & Cornwell, J. (2008) Seeing the Person in the Patient: cine, 8, 32–36. the Point of Care Review Paper. London: The Kings Fund. 14. Intercalated BA in Medical Humanities at the University of Bristol. 27. Cox, J., Campbell, A. V. & Fulford, K. W. M. (2007) Medicine of the (2009) Available at: http://www.bris.ac.uk/philosophy/prospective/ Person: Faith, Science and Values in Health Care Provision. London: undergrad/iBAMH_details.html (last accessed 23 November 2010). Jessica Kingsley. 15. Hopkins, A. (1979) Understanding Music. London: Dent & Sons. 28. Mead, N. & Bower, P. (2000) Patient-centredness: a conceptual frame- 16. Cox, M. (1978) Structuring the Therapeutic Process: Compromise work and review of the empirical literature. Social Science and Medi- with Chaos. Oxford: Pergamon Press. cine, 51, 1087–1110. 17. Erikson, E. H. (1950) Childhood and Society. New York: W.W. 29. Cox, J. (2010) Medicine of the Person and Personalised Care: a stitch Norton. in time saves nine? Journal of Evaluation in Clinical Practice,16, 18. Ainsworth, M. D. S. & Whittig, B. A. (1969) Attachment and explor- 315–317. atory behaviour of one-year-olds in a strange situation. In Determi- 30. Engel, G. L. (1977) The need for a new medical model: a challenge for nants of Infant Behaviour (Vol. II) (ed. B. M. Foss), pp. 111–136. biomedicine. Science, 196, 129–136. London: Methuen. 31. Ghaemi, S. N. (2010) The Rise and Fall of the Biopsychosocial Model: 19. Cox, M. & Tielgaard, A. (1986) Mutative Metaphors in Psycho- Reconciling Art and Science in Psychiatry. Baltimore, MD: John therapy: the Aeolian Mode. London: Tavistock Publications. Hopkins University Press. 20. Cox, M. (1992) Shakespeare Comes to Broadmoor: ‘The Actors are 32. Cox, J. & Gray, A. (2009) Psychiatry for the Person. Current Opinion Come Hither’. The Performance of Tragedy in a Secure Psychiatric in Psychiatry, 22, 587–593. Hospital. London: Jessica Kingsley. 33. Polonyi, M. (1967) The Tacit Dimension. London: Routledge. 21. Chochinov, H. (2007) Dignity and the essence of medicine: the A, B, 34. De Marinis, V. (2003) Pastoral Care, Existential Health, and Existen- C and D of conserving care. British Medical Journal, 335, 184–187. tial Epidemiology: A Swedish Post-Modern Case Study. Stockholm: 22. Gilbert, P. (2007) The spiritual foundation: awareness and context for HSFR.

From the Second Geneva Conference on Person Centered Medicine Person-Centered Medicine: From Concepts to Practice

Outlining the bases of person-centred integrative diagnosisjep_1581 354..356 Ihsan M. Salloum MD MPH1 and Juan E. Mezzich MD PhD2

1Professor of Psychiatry and Director, Division of Alcohol and Drug Abuse: Treatment and Research, University of Miami Miller School of Medicine, Miami, Florida, USA 2Professor of Psychiatry and Director, International Center for Mental Health, Mount Sinai School of Medicine, New York, New York, USA

Keywords Abstract diagnosis, diagnostic models, person-centred Rational and aims As diagnosis is a critical ﬁrst step for clinical care, it was early recognized that an appropriate diagnostic model was necessary as informational basis for Correspondence person-centred clinical care. Professor Ihsan M. Salloum Methods The design of a person-centred integrative diagnosis model was based on litera- Division of Alcohol and Drug Abuse: ture reviews and work meetings in London, Paris, Geneva, Preston, UK and Uppsala, Treatment and Research Sweden over the past 2 years. University of Miami Miller School of Results and conclusion The current person-centred integrative diagnosis model argues for Medicine a broader concept of diagnosis and covers both ill health and positive health through the 1120 NW 14th Street following three levels: Health Status (from illness to recovery/wellness and from disabili- Room 1449 ties to adaptive functioning), Experience of Health (cultural factors and values concerning Miami, FL 33136 ill health and positive health) and Contributory Factors (including internal and external risk USA and protective factors). Each of these domains will be evaluated with standardized catego- E-mail: [email protected] ries and dimensions as well as narratives. Speciﬁc attention is paid to evaluators (clinicians, patient, family and other carers) and the interactive evaluation process. Accepted for publication: 11 October 2010 doi:10.1111/j.1365-2753.2010.01581.x

Introduction including the primary components of this model: multi-level domains of health status, descriptive tools and evaluators (the Person-centred clinical care proposes the whole person in context, protagonists of the diagnostic process). as the centre and goal of clinical care and public health [1,2]. As diagnosis is a critical first step for clinical care, it was early Key concepts recognized that an appropriate diagnostic model was necessary as informational basis for person-centred clinical care. Diagnosis has The 20th century Spanish philosopher and humanist, Ortega a fundamental role in medicine as the basic unit in the process of y Gasset (1883–1955), dictum ‘I am I and my circumstance’ medical care. It is essential for communication among health pro- cogently captures the overarching concept embodied in the PID of fessionals and other stakeholders; it is fundamental for the process considering ‘the whole person in context’, as the centre and goal of of clinical care and the identification and treatment of disorders; clinical care and public health. The key concept in the PID is its it is used for prevention and health promotion, for conducting consideration of a broader and deeper notion of diagnosis (to research, testing interventions and understanding disease mecha- include positive and ill aspects of health), which goes beyond the nisms. Diagnosis is needed for education and training and for a host restricted concept of nosological diagnoses. The notion of diagno- of administrative purposes from quality improvement to reimburse- sis as a formulation of health status, and as a process involving the ment activities. The pivotal role of diagnosis in the clinicians’ work interactive participation and engagement of clinicians, patients and was cogently expressed by Feinstein [3] as ‘Diagnostic categories families, represents a paradigm shift. provide the locations where clinicians store the observations of The concept of diagnosis in the PID is to provide broader clinical experience’ and ‘The diagnostic taxonomy establishes the understanding of the person’s health status, describing both posi- patterns, according to which clinicians observe, think, remember tive and ill health (disorders and disabilities as classified by the and act’. As diagnosis is a critical first step for clinical care, it was International Classification of Diseases and its national and early recognized that an appropriate diagnostic model was neces- regional adaptations), and to also include an innovative focus on sary as informational basis for person-centred clinical care. positive aspects of health such as adaptive functioning, protective This manuscript presents key concepts, evolving structure and factors and quality of life, deemed crucial for enhancing recovery design of the person-centred integrative diagnosis (PID) model, and health restoration.

A broader perspective on the meaning of diagnosis may also be presenting for care, as opposed to a predominant focus on pathol- gleaned from its etymological roots. Diagnosis has been derived ogy. Thus, the two broad domains covered are ill health and posi- from two connotations. On the one hand, diagnosis is derived from tive aspects of health. In each of these domains, the PID schema the Greek word ‘dia’, which refers to elucidating a disorder, a provides for a standardized component and for a narrative, idio- meaning that is more consonant with the common etiopathogenic graphic personalized component. The integration of these domains meaning of diagnosis. The other term, also from the Greek lan- and components aims at forming the informational bases for inter- guage, is ‘diagignoskein’ which refers to the understanding vention and care, such as developing treatment plans to guide of the person, reflecting the meaning of health (sanscrit hal)as recovery and health restoration, in addition to providing the infor- wholeness. This latter definition is particularly suitable for chronic mational bases for education, public health planning and for diseases, such as diabetes, hypertension or obesity, where behav- administrative functions. ioural components can assume significant role. The evolving PID model has currently three main levels within Reflecting on the meaning of diagnoses in medicine, the each health status domain (ill health vs. positive health status medical historian Lain-Entralgo stated that, ‘diagnosis is more domains) [12]. Within the ill health status domain, the first level is than identifying disorders (nosological diagnoses)’, or ‘distin- ill health and its burden. This is further divided into two sub-levels: guishing one disorder from another (differential diagnosis); diag- the first sub-level corresponds to clinical disorders, both mental nosis is really understanding what is going on in the mind and and general health. The second sub-level corresponds to disabili- body of the person who present for care’ [4]. A broader under- ties (regarding self-care, occupational functioning, functioning standing of diagnosis that goes beyond the ethiopathogenic under- with family and participation in community activities). The second standing has been reflected in ancient traditional medicine as well ill health domain level corresponds to the idiographic personalized as in modern understanding of health. For example, in the ancient narrative covering the experience of illness. This includes topics Chinese medicine, diagnostic indicators were always viewed such as sufferings, values and cultural experience of illness and holistically. The Indian medical tradition, Ayurveda, which means care. The third level within the ill health domain covers risk factors the science of living, views health as harmony between body, mind and contributors to ill health. These include inner risk factors such and spirit. Pointedly, in modern times, the World Health Organi- as genetic vulnerability and external risk factors such as stressors. zation Constitution defines health as ‘Health is a state of complete Factors in this domain may also be conceptualized using a bio- physical, emotional, and social well being, and not merely the psycho-social framework. absence of disease’ [5–8]. Wellness is the first level of the positive health status domain. A second key concept of the PID is its emphasis on an inclusive This is further divided into two sub-levels: the first sub-level cor- and egalitarian process, highlighting the importance of all protago- responds to remission/recovery (health restoration and growth), nists of the clinical encounter into the diagnostic process. Diagnos- while the second sub-level corresponds to functioning. The second tic formulation in the PID is also considered an ongoing process level of positive health domain corresponds to the idiographic constructed through interactive partnership involving a dialogue personalized narrative covering the experience of health. This between the primary stakeholders and evaluators. This partnership includes topics such as quality of life, values and cultural formu- of equals includes the clinician (the conventional expert), the lation of identity and context. The third level in the positive health patient (the protagonist, informationally and ethically), the family status domain covers protective factors and contributors to positive (crucial support group) and community members (teachers, social health. These may include inner protective factors such as workers, etc.). Thus, the PID, through this process, upholds the resilience, and external protective factors such as social support. dignity, values and aspirations of the person seeking care. These factors may also be conceptualized in a bio-psycho-social framework (Fig. 1). Multi-level person-centred integrative Descriptive tools of the PID model include categories, dimen- diagnosis model sions and narratives. Categories, as key descriptor of both ill health and positive aspects of health, will be used, particularly of The design of a PID model was based on literature reviews and a probabilistic type. Dimensions, as descriptive tools, will offer work meetings in London, Paris, Geneva, Preston, UK and the opportunity to measure particular domains in a more quan- Uppsala, Sweden over the past 2 years. It was also based on the titative manner. The richness and availability of information will well-established record of the World Psychiatric Association’s also allow for categorical assignments above a certain threshold experience in the development of diagnostic models and contribu- level. The use of narrative as descriptive tool would offer the tions to the central issue of international diagnoses in psychiatry possibility of a deeper and richer description of a relevant [9]. This is exemplified by the publication of the World Psychiatric domain. This narrative component may also have therapeutic Association’s International Guidelines for Diagnostic Assessment implications as it may foster more meaningful commitment to (IGDA) [10]. The IGDA has been widely accepted and adopted care by persons seeking help as they elaborate to create counter- into regional settings, as illustrated by the Latin American Guide balancing narratives for their respective experiences of illness for Psychiatric Diagnosis [11], which is used in different countries and of health. in Latin America. Evaluators involved in the diagnostic process constitute the third pillar of the PID. While the role of diagnostic evaluators has Person-centred integrative diagnosis domains, had limited attention outside certain themes addressing thera- schema, tools and evaluators peutics, within the PID, evaluators’ role has been elaborated as The current organizational scheme of the developing multi-level ‘Trialogs’ among patients, families and health professionals [13]. PID model proposes to assess the health status of the person The patient as the main protagonist, both for informational source

Figure 1 Schema of the person-centred integrative diagnosis domains.

and as centre of ethical clinical care, the family and/or other world and to serve multiple needs in clinical care, education, important participants as source of support, the carers and perti- research and public health. nent community representatives (e.g. teachers for child diagnosis), and the clinicians as the trained experts constitute the evaluators References team, which jointly would undertake the diagnostic process and formulate planned interventions. 1. Mezzich, J. E. (2007) Psychiatry for the Person: articulating medicine’s science and humanism. World Psychiatry,6(2),1–3. 2. Mezzich, J. E. & Salloum, I. M. (2009) Towards a person-centred Future development of the integrative diagnosis. In Psychiatric Diagnosis: Challenges and Pros- person-centred integrative diagnosis pects (eds I. M. Salloum & J. E. Mezzich), pp. 297–302. West Sussex: Wiley-Blackwell. Development of the PID has been a reiterative process with 3. Feinstein, A. R. (1967) Clinical Judgment. Huntington, NY: Robert E. continuing refinements. Further development will involve the con- Krieger. struction of a practical guide and application manual which will 4. Laın-Entralgo, P. (1982) El Diagnostico Medico: Historia y Teoria. include translation and specification of the theoretical model into a Barcelona: Salvat. set of procedures for practical use. The draft of the PID guide will 5. World Health Organization (1946) WHO Constitution. Geneva: WHO. include its structure and schema, along with the instruments to be 6. Herrman, H., Saxena, S. & Moodie, R. (2005) Promoting Mental used, and the descriptions of the assessment procedures. The fea- Health: Concepts, Emerging Evidence, Practice. Geneva: WHO. sibility, reliability and validity of the PID draft will then be evalu- 7. Patwardhan, B., Warude, D., Pushpangadan, P. & Bhatt, N. (2005) ated through field trials across different realities and settings and a Ayurveda and traditional Chinese medicine: a comparative overview. Evidence-Based Complementary and Alternative Medicine final version will be produced based on the results of the evalua- ,2,465– 473. tion process and on expert discussions and input from health 8. Christodoulou, G. N. (ed.) (1987) Psychosomatic Medicine. New stakeholders. York: Plenum Press. 9. Mezzich, J. E. & Ustun, T. B. (2002) International classification and Conclusion diagnosis: critical experience and future directions. Psychopathology, 35, Special Issue, 55–202. The PID is a novel model of conceptualizing the process and 10. World Psychiatric Association (2003) Essentials of the World formulation of clinical diagnosis. It proposes to implement into Psychiatric Association’s International Guidelines for Diagnostic regular clinical practice the principles and vision of person-centred Assessment (IGDA). British Journal of Psychiatry, 182 (Suppl. 45), clinical care. The PID entails a broader and deeper notion of s37–s66. 11. APAL (2004) Guia Latinoamericana De Diagnostico Psiquiatrico diagnosis, beyond the restricted concept of nosological diagnoses. (GLADP) (Latin American Guide of Psychiatric Diagnosis). Mexico: It involves a multi-level formulation of health status (both ill and Editorial de la Universidad de Guadalajara. positive aspects of health) through interactive participation and 12. Cloninger, C. R. (2004) Feeling Good: The Science of Well-Being. engagement of clinicians, patients and families using all relevant New York: Oxford University Press. descriptive tools (categorization, dimensions and narratives). The 13. Amering, M. & Schmolke, M. (2007) Recovery – Das Ende Der PID model is intended to be used in diverse settings across the Unheilbarkeit. Bonn: Psychiatrie-Verlag.

From the Second Geneva Conference on Person Centered Medicine Person-Centered Medicine: From Concepts to Practice The Multicultural Quality of Life Index: presentation

and validationjep_1609 357..364 Juan E. Mezzich MD PhD,1 Neal L. Cohen MD,2 Maria A. Ruiperez PhD,3 Claudio E. M. Banzato MD PhD4 and Maria I. Zapata-Vega MD5

1President, International Network for Person-centered Medicine, President 2005–2008, World Psychiatric Association and Professor of Psychiatry, Mount Sinai School of Medicine, New York University, New York, USA 2Distinguished Lecturer, Hunter College, City University of New York, New York, USA 3Dean of Social and Human Sciences, Jaume I University, Castellon, Spain 4Associate Professor of Psychiatry, State University of Campinas, Campinas, Brazil 5Assistant Professor of Psychiatry, Elmhurst Hospital Center, Mount Sinai School of Medicine, New York, USA

Keywords Abstract comprehensive diagnosis, culture, person-centred care, quality of life, scales, Rationale and objectives Quality of life has emerged as a crucial concept for the assess- validation ment of health and the planning of health care. Desirable features for the evaluation of quality of life include comprehensiveness, self-ratedness, cultural sensitivity, practicality Correspondence and psychometric soundness. An attempt to meet these challenges led to the development Professor Juan E. Mezzich of a brief multicultural quality of life instrument and to the appraisal of its applicability, International Center for Mental Health reliability and validity. Mount Sinai School of Medicine Methods The development of the proposed assessment instrument was based on a wide Fifth Avenue and 100th Street, Box 1093 review of the literature and the engagement of a multicultural mental health scholarly team. New York, NY 10029 Its validation was conducted on samples of psychiatric patients (n = 124) and hospital USA professionals (n = 53) in New York City. E-mail: [email protected] Results A new generic culture-informed and self-rate instrument, the Multicultural Quality of Life Index, has been developed. Its 10 items cover key aspects of the concept, Accepted for publication: 11 October 2010 from physical well-being to spiritual fulﬁlment. Concerning its applicability, mean time for completion was less than 3 minutes and 96% of raters found it easy to use. Test–retest doi:10.1111/j.1365-2753.2010.01609.x reliability was high (r = 0.87). A Cronbach’s a of 0.92 documented its internal consistency and a factor analysis revealed a strong structure. With regard to discriminant validity, a highly signiﬁcant difference was found between the mean total scores of professionals (x = 8.41) and patients (x = 6.34) presumed to have different levels of quality of life. Conclusions The Multicultural Quality of Life Index is a brief and culturally informed instrument that appears to be easy to complete, reliable, internally consistent and valid.

Introduction World Psychiatric Association International Guidelines for Diag- nostic Assessment (IGDA) [5] has included quality of life as a Quality of life is rapidly becoming one of the key concepts in the separate diagnostic axis. health field. Since the 1970s, interest in the assessment of quality While the notion of quality of life is acquiring a prominent place of life has been growing, initially with reference to individuals in the health field, its definition and the approaches to its assess- experiencing oncologic and other chronic general medical ill- ment are still under intense discussion. It has been argued that nesses. In more recent years, such interest has become conspicu- quality of life is a term that describes a field of interest rather than ous also in psychiatry and mental health [1]. This interest has been a single variable. Besides, the challenge represented by the accompanied by increased attention to social functioning, social appraisal of quality of life is becoming increasingly daunting as support and other positive aspects of health relevant to both clini- modern societies have become more heterogeneous and widely cal care and epidemiological work [2,3]. The assessment of quality multicultural. Despite such difficulties, interest on quality of of life is being regarded as a substantial parameter for comprehen- life has not abated, and there are compelling reasons that justify sive diagnostic assessment and to evaluate the effectiveness of its use in the quest for more competent and culturally sensitive health care [4]. Illustrating advances in diagnostic systems, the health care.

The current concept of quality of life has evolved from two purposefulness, wholeness and enjoyment; spirituality, sense different sources: the health-related functional status indexes and of transcendence, religiousness; and global appraisal of quality the social science indexes. It has been pointed out that the fact that of life. these two sources involve disparate approaches and concepts may As can be seen in Table 1, all the dimensions elicited had mul- contribute to confusion on the definition and measurement of tiple endorsements in the reviewed literature, that is, each was quality of life [6]. Thus, a meaningful integration of both perspec- included in at least 6 of the 21 reports. The three most frequently tives is desirable. mentioned dimensions were physical health, psychological health Currently, many instruments designed to measure quality of life and interpersonal functioning (19 reports each), followed by occu- are available. They may be roughly divided into generic and pational functioning (17 reports). These dimensions, in fact, refer disease specific. Detailed and useful comparisons of some of these to the more conventional aspects of health, revealing that the instruments, in terms of scope, design, dimensions and psycho- reviewed literature deals predominantly with the notion of health- metric soundness have been published [7]. Some preliminary related quality of life. Next in frequency were social-interpersonal reviews suggested that depending on its intended use, a well- supports (16 reports) and various facets of environmental and rounded instrument should assess at least the following five life material support (jointly 15 reports), which correspond to the domains of personal experience: biological, psychological, inter- context of the individual, and have become accepted as significant personal, social and economic [8]. elements of health status [30]. Somewhat less frequent, but still A critical review of the international literature identified the substantial in endorsement, are, on one hand, personal purposeful- following key desirable characteristics for instruments designed to ness, wholeness and enjoyment (jointly 13 reports), and on the assess quality of life: (1) Cultural applicability: sensitivity to other, spirituality, sense of trascendence and religiousness (8 ethnic diversity and ability to take into account cultural back- reports), which together correspond to more subtle but not less ground in order to rate quality of life in a meaningful way. (2) important recently incorporated aspects of health [31]. Of note, Comprehensiveness: coverage should go beyond physical and attention to personal aspirations and spirituality represent distinct emotional well-being, to encompass a broad concept of health contributions from the developing world and traditional societies including social functioning and supports, personal aspirations and towards a more encompassing assessment of quality of life [32]. spiritual fulfilment. (3) Wide applicability: it should be useful and Finally, six of the reviewed multidimensional approaches included relevant for diverse populations and settings, including people global self-assessment of quality of life, which points out the value experiencing both general medical and psychiatric conditions. (4) accorded to the self-perceptions of the individual as the immediate Self-ratedness: this recognizes the predominantly subjective and principal arbiter of quality of life. nature of quality of life and the crucial perspective of the person Working on the literature review summarized on Table 1, the whose life is being assessed. (5) Ease of use: this is of decisive various dimensions corresponding to environmental-material practical value particularly in busy health care settings. (6) Sound support were clustered and consolidated into ‘community and psychometric features: including reliability or generalizability as services support’, and those on personal purposefulness, whole- well as validity or usefulness. ness and enjoyment into ‘personal fulfillment’. The result was the The following sections describe the process and results concern- following 10 dimensions of quality of life: ing the development of the Multicultural Quality of Life Index 1 Physical Well-being (feeling energetic, free of pain and of (MQLI) as an attempt to meet the above listed goals, and then its physical problems) validation in terms of feasibility, reliability, internal consistency 2 Psychological/Emotional Well-being (feeling good, comfort- and discriminant validity. able with yourself) 3 Self-care and Independent Functioning (carrying out daily living tasks; making one’s own decisions) Design and presentation of the 4 Occupational Functioning (able to carry out work, school and Multicultural Quality of Life Index homemaking duties) 5 Interpersonal Functioning (able to respond and relate well to family, friends and groups) Identification of key dimensions 6 Social Emotional Support (availability of people you can trust In order to incorporate the conceptual complexity of quality of life and who offer help and comfort) into the instrument to be developed, an exploration of relevant 7 Community and Services Support (good and safe neighborhood, dimensions was conducted through a review of the international availability of resources, and other services) literature. Attention was focused on reports presenting substantial 8 Personal Fulfillment (experiencing a sense of balance, solidar- discussions of the concept of quality of life or comprehensive ity, and empowerment; enjoying sexuality, aesthetics, etc.) instruments for its assessment. Table 1 displays 21 reports [9–29] 9 Spiritual Fulfillment (having a high philosophy of life; reli- concerning instruments or approaches for the assessment of giousness; transcendence beyond ordinary material life) quality of life and the categorized dimensions of the concept that 10 Overall Quality of Life (feeling satisfied and happy with your each report encompasses. This categorization was based on a the- life in general) matic analysis of the identified dimensions. The obtained themes are presented on the first column of the table, and can be summa- Development of other language versions rized as follows: physical and emotional health; functioning in terms of autonomy, self-care, occupational and interpersonal roles; The design of MQLI took place in a multicultural and multilingual social-interpersonal and environmental-material support; personal professional matrix in New York as represented by the members of

Table 1 Dimensions of quality of life elicited from the international literature

Part 1

Flanagan Hunt & McEwen Bergner et al. Lehman Heinrichs et al. Jones Ferrans & Dimensions (1979) [9] (1980) [10] (1981) [11] (1983) [12] (1984) [13] (1985) [14] Powers (1985) [15]

Physical health X X X X X X Psychological health X X X X X X X Self care X X X Autonomy X X X X Occupational functioning X X X X X Interpersonal functioning X X X X X X Social-interpersonal support X X X X X X Financial resources X X X Safety X X X Other environmental-material XXXXX support Personal purposefulness X X X X Personal wholeness X X X X Personal enjoyment X X X X Spirituality, trascendence, X X religiousness Global appraisal of life X X

Part 2

Thapa & Chambers Kaplan & Anderson Breslow Rowland Schipper et al. Parkerson et al. Skantze et al. Dimensions (1988) [16] (1988) [17] (1989) [18] (1989) [19] (1990) [20] (1990) [21] (1992) [22]

Physical health X X X X X X X Psychological health X X X X X X Self care X X X X Autonomy X X Occupational functioning X X X X X X Interpersonal functioning X X X X X X Social-interpersonal support X X X Financial resources X Safety X Other environmental-material XX support Personal purposefulness X X X Personal wholeness X Personal enjoyment X X Spirituality, trascendence, XXX religiousness Global appraisal of life X X

Part 3

Bech Ware et al. Diamond Bowling WHOQOL Group Felce Russo et al. Dimensions (1993) [23] (1993) [24] (1994) [25] (1995) [26] (1995) [27] (1997) [28] (1997) [29]

Physical health X X X X X X Psychological health X X X X X X Self care X X X X X Autonomy X X X X Occupational functioning X X X X X X Interpersonal functioning X X X X X X X Social-interpersonal support X X X X X X X Financial resources X X X X X X Safety XX XX Other environmental-material XXXXX support Personal purposefulness X X Personal wholeness X Personal enjoyment X X X X Spirituality, trascendence, XX X religiousness Global appraisal of life XX

© 2011 Blackwell Publishing Ltd 359 The Multicultural Quality of Life Index J.E. Mezzich et al. our research team. This included native speakers of Spanish, multicultural community. Elmhurst-Jackson Heights is regarded as English, Korean, Chinese and South Asian languages. Such matrix one of the ethnically most diverse areas of the world. facilitated the conceptualization of a culturally suitable index and the development of several language versions. More specifically, four language versions were developed and studied, as follows. Subject samples and their demographic distribution The English and Spanish versions [33] were developed simulta- To address the research validation questions, two cross-ethnic neously, while the Chinese [34] and Korean [35] versions were English speaking samples with presumed different levels of developed through a process of translation and back-translation quality of life were recruited at Elmhurst Hospital Center. One was related to the English version. composed of adult psychiatric patients receiving care in one of various psychiatric services and the other was composed of actively working health professionals (doctors, nurses, psycholo- Rating approach gists, social workers and administrative staff). Subjects were 18 The 10 items of the MQLI were designed to cover well the rich years of age or older, of either gender, capable of communicating conceptual framework resulting from the literature review. The in English, and willing to provide informed consent to participate items names were carefully and concisely phrased. The prompts in the study. within parentheses offer a brief explanation of each concept. This The psychiatric patient sample was composed of 124 individu- simplicity was intended to allow the person completing the instru- als (41.1% female and 58.9% male) with a mean age of 36.9 years ment a measure of flexibility to rate each item according to his or (SD = 14.7). The health professional sample was composed of 53 her cultural and experiential background. This simplicity and flex- individuals (58.5% female and 41.5% male) with a mean age of ibility, in fact, represent critical features of the MQLI, maximizing 38.2 years (SD = 10.1). Patients and professionals did not differ in each use its cultural relevance. Also, helpful from a transcultural significantly in age (t = 0.665, d.f. = 136.793, P = 0.507), but dif- comparability perspective is that the text of the instrument has fered in gender distribution (c2 = 4.501, d.f. = 1, P = 0.034). The been formulated by a multilingual team speaking English, mean educational level of the total sample was 13.58 years of Spanish, Chinese and Korean. This minimized the emergence of education (SD = 1.26). Patients (mean = 12.14, SD = 3.76) and biases usual in the translation and adaptation of health instruments professionals (mean = 17.10, SD = 3.3) differed significantly in [36,37] and moderated the emergence of biased results from cross- their level of education (t = 7.978, d.f. = 164, P < 0.001). The cultural and cross-lingual assessment [38]. ethnic breakdown of the total sample was 37.3% White, 36.2% The quantification of the standing of the individual on each Hispanic, 15.3% Asian, 8.5% Black and 1.1% of other ethnicity. quality of life dimension is obtained through his or her ratings and markings on a 10-point scale ranging from poor to excellent. The MQLI final score is obtained by computing the average of the Evaluation procedures and data collection scores (1–10) of all the items actually rated by the individual. The sampled psychiatric patients were initially informed about the study by a treating clinician and those interested in participating were introduced to research assistants trained to monitor the Presentation of the form for the Multicultural completion of the instrument. Participation was voluntary, virtu- Quality of Life Index – English ally no subject declined to participate, and written informed version (MQLI-En) consent was obtained from all subjects at the time of enrolment The format for the MQLI-En was produced on the basis of the through protocols approved by the local Institutional Review selected dimensions of quality of life and the rating approach Board. Information relevant to the feasibility, reliability, internal outlined in the preceding section. It is presented as Fig. 1. The structure and discriminant validity of the MQLI-En was collected form also includes the subject’s demographic information, moni- and statistically analysed. tor’s name and date. The role of the monitor is simply to present the form to the subject, answer general questions and encourage the subject to complete the procedure. The form contains instruc- Validation results tions for filling out the MQLI-En and a slot for recording the final score as the average of the completed item ratings. Feasibility Concerning time to complete the MQLI-En, the average time taken Validation of the Multicultural Quality by patients was 2.4 minutes (SD = 1.3, range: 0.83–15 minutes) of Life Index – English version and by professionals 1.3 minutes (SD = 0.5, range: 0.58–4.3 minutes). The samples differed significantly in the time needed to complete it (t =-7.660, d.f. = 174.24, P < 0.001). In the combined Method of the Validation Study sample, the average time was 2.03 minutes (SD = 1.3, range: 0.58–15 minutes). Location of the Validation Study With reference to ease of use of the MQLI-En, Table 2 presents The study was conducted at Elmhurst Hospital Center, a large the distribution of this variable as perceived by the subjects and the general hospital located in Elmhurst, Western Queens, New York monitors. The vast majority of subjects and monitors (over 96% of City, and a campus of the Mount Sinai School of Medicine, New them) perceived the MQLI-En as very easy or somewhat easy to York University. It is the main health care resource for a highly use (as opposed to somewhat difficult or very difficult to use).

Multicultural Quality of Life Index (Mezzich, Cohen, Ruipérez, Liu & Yoon, 1999) Subject Version

Subject Name: ______Subject Code: ______Average score Age: _____ years Gender: Female Male Interviewer: ______Ethnic group: ______Date: ______

Instructions: Please indicate the quality of your health and life at present, from “poor” to “excellent”, by placing an X on any of the ten points on the line for each of the following items:

1. Physical Well-being (feeling energetic, free of pain and physical problems) Poor Excellent 1 2 3 4 5 6 7 8 9 10

2. Psychological/Emotional Well-being (feeling good, comfortable with yourself) Poor Excellent 1 2 3 4 5 6 7 8 9 10

3. Self-Care and Independent Functioning (carrying out daily living tasks; making own decisions) Poor Excellent 1 2 3 4 5 6 7 8 9 10

4. Occupational Functioning (able to carry out work, school and homemaking duties) Poor Excellent 1 2 3 4 5 6 7 8 9 10

5. Interpersonal Functioning (able to respond and relate well to family, friends, and groups) Poor Excellent 1 2 3 4 5 6 7 8 9 10

6. Social-Emotional Support (availability of people you can trust and who can offer help and emotional support) Poor Excellent 1 2 3 4 5 6 7 8 9 10 7. Community and Services Support (pleasant and safe neighborhood, access to financial, informational and other resources) Poor Excellent 1 2 3 4 5 6 7 8 9 10

8. Personal Fulfillment (experiencing a sense of balance, dignity, and solidarity; enjoying sexuality, the arts, etc.) Poor Excellent 1 2 3 4 5 6 7 8 9 10

9. Spiritual Fulfillment (experiencing faith, religiousness, and transcendence beyond ordinary material life) Poor Excellent 1 2 3 4 5 6 7 8 9 10

10. Global Perception of Quality of Life (feeling satisfied and happy with your life in general) Poor Excellent 1 2 3 4 5 6 7 8 9 10

Figure 1 Format of the Multicultural Quality of Life Index.

Table 2 Ease of use of the Quality of Life As perceived by subjects As perceived by monitors Index – English version, as perceived by subjects and the monitors Patients (%) Professionals (%) Patients (%) Professionals (%) Degree of ease of use (n = 124) (n = 53) (n = 122)* (n = 53)

Very easy 72.6 86.8 83.6 90.6 Somewhat easy 23.4 11.3 10.7 9.4 Somewhat difﬁcult 4.0 1.9 4.1 0 Very difﬁcult 0 0 1.6 0

*Valid percentages only, excluding missing values.

Table 3 Factorial structure of the Quality of Life Index – English version Table 4 Test–retest reliability coefﬁcients for the Quality of Life Index – on a combined sample of English-speaking patients (n = 124) and pro- English version on a combined sample of English-speaking patients fessionals (n = 53) (n = 124) and professionals (n = 33)

Items Factor loadings Items Correlation coefﬁcient

1. Physical well-being 0.71 1. Physical well-being 0.74 2. Psychological/emotional well-being 0.84 2. Psychological/emotional well-being 0.79 3. Self-care and independent functioning 0.81 3. Self-care and independent functioning 0.69 4. Occupational functioning 0.77 4. Occupational functioning 0.76 5. Interpersonal functioning 0.73 5. Interpersonal functioning 0.67 6. Social emotional support 0.73 6. Social emotional support 0.69 7. Community and services support 0.75 7. Community and services support 0.72 8. Personal fulfilment 0.81 8. Personal fulfilment 0.72 9. Spiritual fulfilment 0.66 9. Spiritual fulfilment 0.79 10. Global perception of quality of life 0.86 10. Global perception of quality of life 0.73 Variance accounted for: 59.34% Average score 0.87

K-M-O measure of sampling adequacy = 0.937. Bartlett’s test of sphericity: c2 = 1031.8, d.f. = 45, P < 0.001.

Table 5 Discriminant Validity of the Quality of Patients (n = 124) Professionals (n = 53) Life Index – English version, indicated through Items Mean (SD) Mean (SD) the comparing of mean scores between 1. Physical well-being 6.27 (2.49) 7.89 (1.19) English-speaking patients and professionals on 2. Psychological/emotional well-being 6.10 (2.48) 8.09 (1.39) individual items and the main average score 3. Self-care and independent functioning 6.74 (2.29) 9.00 (1.02) 4. Occupational functioning 6.20 (2.50) 8.98 (0.97) 5. Interpersonal functioning 6.43 (2.42) 8.64 (1.40) 6. Social emotional support 7.06 (2.33) 8.51(1.35) 7. Community and services support 6.64 (2.46) 7.96 (1.53) 8. Personal fulﬁlment 5.56 (2.42) 8.40 (1.03) 9. Spiritual fulﬁlment 6.38 (2.56) 8.40 (1.10) 10. Global perception of quality of life 5.95 (2.61) 8.23 (1.33) Overall average score 6.34 (1.77) 8.41(0.92)

*P < 0.001 (two-tailed) for all patient–professional differences.

Internal structure individual items, ranging from 0.67 to 0.79 (significantly different from zero at P < 0.01) and it reached 0.87 (P < 0.01) for the The internal consistency (Cronbach’s a) of the MQLI-En was average score. quite high in the combined sample (a=0.92), the professional sample (a=0.91) and the patient sample (a=0.90). The factor analysis (principal components method) of the MQLI-En’s 10 Discriminant validity items in the combined sample of 177 patients and professionals, The discriminant validity results for the MQLI-En are presented presented in Table 3, yielded one single factor, which accounted on Table 5. A significant difference (P < 0.001) was found between for a remarkable 59.34% of the items’ variance. Furthermore, the the mean average score of patients (mean = 6.34, SD = 1.77) totality of the MQLI-En items had loadings above 0.6 on this and professionals (mean = 8.41, SD = 0.92) (t = 10.194, d.f. = factor. 168.322, P < 0.001), presumed to have different quality of life levels. Significant differences between the two samples were also found for every single item. Test–retest reliability

The MQLI-En was applied twice to subsamples of patients Discussion (n = 124) and professionals (n = 33) (20 of the 53 professionals participating in the study were not available to complete retest A comparison of the MQLI design features against the list of exercises) with an interval between test and retest of 1–15 days critical issues for the assessment of quality of life presented earlier (mean interval: 5.32 days; SD = 2.13) to assess instrumental reli- in this paper stimulates the following comments. ability or generalizability in terms of correlation coefficients cal- Concerning comprehensiveness, the MQLI-En and its 10 indi- culated for individual items and the main average score. As shown vidual items, despite its brevity, reflect virtually all important on Table 4, the reliability coefficients were quite substantial for aspects of quality of life reported in the international literature,

362 © 2011 Blackwell Publishing Ltd J.E. Mezzich et al. The Multicultural Quality of Life Index from conventional physical and emotional well-being, to various City, as well as, through collaboratory arrangements, in other parts aspects of functioning, social and environmental context, personal of the world. and spiritual fulfilment and global self-assessment. 2 Development of MQLI versions for the use of complementary Regarding evaluators, in line with the predominantly subjective evaluators, such as clinicians, family members and caregivers. nature of the quality of life concept, the MQLI-En is to be com- These would have the same basic content and format as the principal pleted directly by the subject. However, the development of MQLI, to facilitate integration and comparison of results, as well as complementary versions to be completed by clinicians, family incorporate adjustments in the instructions for completing the form. members and caregivers may be worth exploring, particularly, 3 To understand more deeply the results yielded by the MQLI, the when subjects have difficulty completing self-evaluations. identification of the quality of life dimensions most important or Cultural suitability was also attended to in instrument develop- meaningful for a given person could be ascertained. One efficient ment. First, its content reflected perspectives elucidated from and indirect approach would involve identifying, on a completed across international and multicultural settings. The multilingual MQLI form, the dimensions having the closest ratings to his or her process employed for the development of the various language global perception of quality of life. Subjects could also be asked to versions of the instrument also speaks to the engagement of cul- undertake the additional rating step of circling the dimensions tural diversity. The various language versions of the MQLI most meaningful to them, as well as to engage in narrative elabo- (English, Spanish, Chinese, Korean, Portuguese, German) are ration of their perceived quality of life given that numerical ratings being studied in New York and in other parts of the world [33,39– do not allow the understanding that stories can offer. 44]. Furthermore, the MQLI-En, with its minimal definition of each dimension has the potential to promote the subjects’ inter- Conclusions pretation and rating of the dimensions in consonance with their own cultural framework. The results of the development and validation of the MQLI sug- In regard to generic versus disease-specific applicability, the gested that it is one of the most comprehensive in scope (from MQLI-En can be recognized as a generic instrument for person- physical to spiritual aspects), and, at the same time, highly efficient based assessment of quality of life across different clinical condi- (taking few minutes to be completed). The psychometric testing of tions and settings. This was shown by studies with subjects with the English version has documented its test–retest reliability, inter- multiple sclerosis [44], sleep disorders [45] and AIDS [42]. As a nal consistency and discriminant validity. Additionally, the MQLI generic instrument, the MQLI focuses the evaluation on the person seems to facilitate subjects to respond and rate their quality of life at hand (who is the centre and agent of quality of life) rather than according to their cultural framework. A number of recent publi- on illnesses present. Further to note is the use of the MQLI in cations provide evidence of the relevance of the MQLI to assess community settings [46,47]. quality of life in people experiencing a range of psychiatric and Rapid administration time (1–3 minutes) and ease of admin- general medical clinical conditions as well as in epidemiological istration, as efficiency indicators documented in this study, are surveys. Therefore, the instrument may be useful in both clinical distinct assets of the MQLI-En. Efficiency under additional clini- and community settings. cal and socio-cultural situations could be usefully explored. The substantial test–retest reliability obtained empirically in Acknowledgements this study is quite encouraging, particularly considering the defi- nitional flexibility allowed for the sake of cultural suitability. We would like to express gratitude for the contributions of our One could argue that the test–retest interval (1–15 days) may colleagues, Drs G.Yoon, J. Liu, C. Perez, S. Hyzak and F. Cancino. have been too short in some cases. On the other hand, length- ening this interval may have complicated the retention of References research subjects. Discriminant validity is a major evaluative aspect. The highly 1. Katschnig, H. & Angermeyer, M. C. (1997) Quality of life in mental significant difference found between samples with presumably disorders. In Quality of Life in Depression (eds H. Katschnig, H. Freeman & N. Sartorius), pp. 137–148. NewYork: Wiley & Sons Press. different levels of quality of life documented the discriminant 2. World Health Organization (2004) Report of the Executive Board, validity of the MQLI-En. Other validational strategies, such as 101st Session. Geneva: WHO. assessment of convergence validity between the MQLI and more 3. Mezzich, J. E. 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From the Second Geneva Conference on Person Centered Medicine Person-Centered Medicine: From Concepts to Practice

Prospects for person-centred diagnosis in general medicinejep_1582 365..370 Michael Klinkman MD MS1 and Chris van Weel MD2

1Chair, World Organization of Family Doctors (Wonca) International Classiﬁcation Committee, and Department of Family Medicine, University of Michigan Health System, Ann Arbor, Michigan, USA 2Immediate Past President, World Organization of Family Doctors (Wonca), and Department of Primary and Community Care, Radboud University Nijmegen Medical Centre, Nijmegen, the Netherlands

Keywords Abstract biopsychosocial model, health information technology, patient-centred health care, Fundamental changes in health care delivery are revealing the limitations of our collective patient-centred medical home, focus on disease-speciﬁc and technology-driven health care. We increasingly treat diseases, person-centred care, primary health care not persons, and it moves individuals from active participants in the care process to passive recipients of interventions. This problem is especially important for general medicine, Correspondence where we must maintain the balance between person and disease, caring and technology. In Michael Klinkman this chapter, we focus on prospects for person-centred diagnosis and treatment in general Department of Family Medicine (primary care) medicine in this time of change. We describe one way to employ the University of Michigan Health System biopsychosocial model to integrate person-centred diagnosis in routine clinical practice, 1018 Fuller Street and we propose a ‘person-centred path’ for primary care development with the health Ann Arbor, MI 48109 information technology tools we will need to develop to follow that path. USA E-mail: [email protected]

Accepted for publication: 11 October 2010 doi:10.1111/j.1365-2753.2010.01582.x

Introduction The core task(s) of primary health care We are now in a time of great and fundamental change in health Although the specific circumstances and processes of medical care care delivery. Developed nations are struggling to harness health vary from country to country, the core tasks of family doctors/ care technology so that its overuse does not bankrupt national general practitioners are the same: economies. We are seeing the limitations of our collective focus • To understand the full range of clinical problems faced by on disease-specific and technology-driven care. We treat diseases, patients; not persons, and it moves individuals from active participants in • To know the social and personal context in which these prob- the care process to passive recipients of interventions. At the lems occur; same time, developing nations are looking to developed nations • To take into account patients’ own priorities and goals when for assistance in organizing systems of care and implementing making decisions about treatment; health information technology, and are at risk of building systems • To carry out preventive services and help patients identify and that will only reproduce the problems faced in the developed manage health risks. world. These tasks are accomplished in a stream of encounters over time, These struggles are particularly relevant to the future of primary during which circumstances, priorities, clinical knowledge and health care. Everywhere in the world, from highly developed ‘rules’ are moving targets. Much of the work of primary care health care delivery systems to developing regions, primary health clinicians is in establishing and updating priorities for care, as it is care has the same purpose – to meet the needs of persons living in rare that patients present with only one clinical problem. To do this the community. In primary care we must maintain the balance right requires that clinicians operate using a person-centred between person and disease, caring and technology. approach. In this chapter, we focus on prospects for person-centred diag- But the person-centred approach requires time – and time is the nosis and treatment in general (primary care) medicine in this time most limited resource in the current world of health care delivery. of change, and how we might integrate the person into our evolv- Published studies confirm that primary care clinicians have ing health care technology infrastructure. between 7 and 20 minutes per encounter to address 2–7 distinct

© 2010 Blackwell Publishing Ltd, Journal of Evaluation in Clinical Practice 17 (2011) 365–370 365 Person-centred diagnosis in medicine M. Klinkman and C. van Weel problems, with an average of 4 minutes of time to spend per A medical practice that operates as a PCMH consists of the problem [1–3]. Because most encounters are driven by patient personal doctor leading a team of health care professionals demand to address acute problems or concerns, where can clini- who collectively take responsibility for the ongoing care of cians find the time required to address prevention, documentation, the patient. and handle administrative services? While these issues affect all of A whole person orientation is a key component of the general medicine, primary care presents the most difficult set of PCMH. The personal doctor is responsible for providing for problems. Primary care clinicians cope by ‘satisficing’ [4–6] – all the patient’s health care needs or taking responsibility for using quick decision strategies based on incomplete information managing care with other qualified professionals. This that are ‘good enough’ most of the time, then using time to sort out includes care for all stages of life; acute care; chronic care; those problems that require special care. Primary care clinicians preventive services; and end-of-life care. also satisfice when they assign formal diagnoses at clinical Care is coordinated across all elements of the patient’s encounters. They use short cuts. They don’t care so much about community including the health care system (hospitals, home precision. They don’t memorize the long and arbitrary criteria lists health agencies, nursing homes, consultants and other compo- required to assign many current mental health diagnoses [7–9]. nents of the complex health care system), facilitated by regis- Given this situation, how can we accommodate the additional tries, information technology, health information exchange work of learning about the context of patient’s lives – and their and other means to assure that patients get the indicated care preferences, priorities and goals for treatment? when and where they need and want it [13]. This definition provides a roadmap to develop the tools and pro- The current situation: chaos and the cesses necessary to implement person-centred medicine in the promise of the patient-centred medical USA, and it is one of the innovations at the centre of the U. S. home (PCMH) health care reform effort [14–16]. It may also work for developed health care markets elsewhere. But it will require a major trans- In the USA, and to some degree in other developed countries, the formation in how health care is organized and how primary care coping strategies listed above are becoming more difficult to main- clinicians are reimbursed for the services they provide. tain for several reasons: • Information overload on specific clinical problems (new guide- A conceptual model for person-centred lines, new treatment recommendations, new data) has outpaced diagnosis in general medical practice information management strategies; • Lack of knowledge about how clinical problems interrelate Primary care patients frequently present for care with a mixture of makes much of the available information irrelevant to managing psychological, physical and social problems. Our reductionistic patients in the ‘real world’; scientific model copes with this phenomenon by viewing medical • Increased time and effort required to manage complex health care through the lens of a single disease and labelling other dis- information technology software [most notably ambulatory elec- eases and problems as ‘co-morbidity’ to be addressed after the tronic health records (EHRs)] has had far greater negative impact ‘primary’ disease or condition. While this approach may work on primary care than specialty care [10–12]; for specialty-based medical care, it does not work well in general • The current generation of EHRs do not readily accommodate medical settings. ‘Co-morbid’ conditions may be related through patient-side data such as the stated reason(s) for encounter, common causal pathways, but more often are coincidental [17]. patients’ own priorities and goals, or relevant social context; Mental health and general medical co-morbidities, along with • Coordination of information – and care – between primary and social problems, are the rule rather than the exception in persons specialty practice has become more important, and is unsupported presenting to primary care clinicians. They are such a part of the by a visit-based reimbursement system and stand-alone EHR fabric of routine general medical practice that the use of the term products; ‘co-morbid’, which implies sporadic co-occurrence of indepen- • The growing effort to move mental health care into the general dent conditions, is potentially very misleading. Our understanding medical setting while maintaining specialty-based standards has of primary care might be enhanced by replacing ‘co-morbidity’ added new tasks without providing additional support. with ‘multi-morbidity’ and focusing effort on the integration of In light of these events, many primary care clinicians are retreating diagnosis and treatment across domains [18–20]. into a more narrow focus on current clinical problems and on It can be useful to visualize this ongoing interaction among improving those outcomes of care that can be measured. This general health problems, mental health problems and social prob- makes implementing patient-centred care far more difficult. lems in a three-dimensional biopsychosocial space [21]. In this But there is hope for the person-centred approach. Recently in space, the severity or level of problems in each domain at a single the USA there has been a great deal of discussion about the point in time can be plotted on an axis (Fig. 1) as a rough estimate PCMH. This label covers a large portfolio of related changes in of the overall burden of illness. Over time, the position of the point health care delivery, with the goal of transforming the health care on each axis will change. process so that it can better serve the needs of individual patients. As the biopsychosocial model [22] would predict, these three As defined by the American Academy of Family Physicians: domains are highly correlated. Mental health problems are known The patient-centred medical home (PCMH) is a model of to occur more frequently in those with common chronic physical health care delivery that is based on an ongoing personal rela- illness, such as diabetes, arthritis and heart disease [23–27], general tionship with a doctor. This personal patient/doctor relation- medical conditions affect how persons experience and cope with ship provides continuous and comprehensive health care. their mental health problems [26,28,29], and the presence of social

Person A: - moderate level of general medical problems Social C - high level of mental problems health problems - fairly low level of social problems Mental Person B: “classic” biomedical health illness problems - high level of general A medical problems - low level of mental health problems - minimal level of social problems Person C: - low level of general General B medical problems medical - moderate level of mental problems health problems - very high level of social problems

Figure 1 The three-dimensional matrix of NOTE: Although person “B” is often considered to be the most severely ill in medical terms, the primary care diagnosis. overall burden of illness is higher for persons A and C.

Figure 2 Three-dimensional matrix for patient RN.

problems or the occurrence of significant life events have a major conflict with his extended family. He has extreme frustration with impact on the severity of mental health problems or outcomes of his limitations in health and function and chronic anxiety primarily care for chronic physical illness [30–32]. Over time, changes in the related to his long-term health prognosis. The real reason for severity of general health problems may create additional social his visit is depression and relationship issues, worry and anger problems or intensify existing mental health problems, and increas- management. ing severity of mental health problems may amplify physical symp- Creating a 3D problem matrix for RN (Fig. 2) illustrates the sever- toms. Understanding and managing these interactions is a core part ity of his problems in all dimensions. His medical problems are of the everyday work of a primary care doctor. severe, but the added burden of his depressive and anxiety symp- Here is an example of how this framework can help clinicians toms and social problems makes caring for this person a complex achieve person-centred diagnosis, from a recent half-day clinical and difficult task. Given the range and severity of RN’s problems, session of one of the authors (MK). it will be necessary to work with him to identify his primary • First patient of session: RN goal(s) for care. 45-year-old man, to be seen for ‘cough’. He has a rare genetic • Next patients in session: MS, MK, DA, JN, CM syndrome causing pulmonary hypertension, multiple polyps, and Each patient has a mix of medical, mental health and social prob- predisposing him for cancers. Other active problems include lems: for example, MS has severe medical problems but minimal asthma with recurrent bronchitis, chronic trunk/back pain, chronic emotional or social problems, while DA is in crisis from relation- airway problems with indwelling tracheostomy and MRSA colo- ship problems, exacerbating her chronic depression. CM is a nization, toxic multinodular goiter, chronic depression, anxiety healthy patient with an acute respiratory tract infection, a welcome and sleep problems. respite in a complicated afternoon. Their superimposed 3D He is married, has a young child with the same genetic disorder problem matrices (Fig. 3) highlight the significant overall burden and ADHD. He is disabled, has done part-time volunteer work. He of illness in each domain addressed over the course of a single and his wife have significant relationship problems, and he has clinical session.

Figure 3 Three-dimensional matrix for several patients seen in clinical session (RN, MS, MK, DA, JN, CM).

Person-centred, biopsychosocial diagnosis can be supported by • simple, interoperable clinical groupware to provide health IT, use of this framework, but we are a long way from implementing with components able to accommodate a patient-oriented data this in a rigorous, quantitative fashion in everyday clinical prac- model; tice. Although we have standard classification tools that can • very simple decision support tools (simple prompts or remind- provide diagnostic codes for social problems (International Clas- ers) – until we have the understanding of how all aspects of the sification of Primary Care, to a lesser extent ICD-10) [21,33–35], biopsychosocial model operate in care; primary care clinicians too often restrict their documentation to • quality assessment and payment based upon achieving mutually include only medical and mental health diagnostic coding. We will agreed upon goals for care, or ordered by priority; not be able to fully implement person-centred diagnosis until we • Personal Health Records that link to provider-side health IT to make better use of these classification tools. integrate person-centred care into everyday clinical workflow It is likely that in some countries a version of the first path will Two visions for person-centred be taken, particularly where large investments in health IT have diagnosis in general medicine in 2019 already been made. In countries now preparing to invest in health IT infrastructure, a clean-slate approach may be possible. In either The disease technology path case, specific development of tools and processes to integrate person-centred care will be required. This is what we will most likely experience if we continue on the path we have taken with its emphasis on the marketing of disease treatment (‘disease management’) to date, particularly in light of How will we get there? Items needed the health information technology (health IT) purchase incentives for the person-centred ‘toolbox’ in embedded in the American Recovery and Reinvestment Act of general medicine 2009. The challenge in front of us is to not settle for just identifying best ‘Enterprise’ health IT products that are more expensive to pur- • practices and creating new standards for person-centred care.We’ve chase, more complex to use, more template-driven, based on an been there, done that – over and over – for specific clinical problems outdated disease-oriented data model; such as hypertension, with little impact on overall clinical out- decision support based upon specific conditions rather than • comes. If our goal is to transform practice, we must build from the persons (disease management templates); OR bottom up and we must keep in mind how difficult it is to implement decision support that requires accurate and specific data far • anything more in the primary care setting. We must identify those beyond the level available in routine primary care (for ‘knowledge elements of person-centred care that are absolutely critical to its management’); success (not just things ‘it would be good to know’). We must figure quality assessment (and doctor payment) based on specific and • out how to efficiently and reliably collect and use information about measurable disease-specific outcomes; those elements. Finally, we must find a way to integrate these electronic Personal Health Records that are not interoperable • elements into everyday care. This will be a daunting task, and it will with provider-side health IT; be inextricably linked to advances in health IT. Here is a short list of competition rather than collaboration, involving multiple • things we need to do as soon as possible in each area, along with a vendors and for-profit entities. few examples of work that is currently underway.

The person-centred path Develop a patient-centred ‘primary care This is a high-risk path. It represents an extended version of an data model’ approach to health information technology that has attracted a growing number of advocates, from health informatics experts to This must be a simple way to portray the information needed for practicing clinicians to large information management firms such routine primary care practice: the specific data elements, their as IBM. This vision is based upon use of simple, interoperable, relationships and how they are to be used in care. The model can open-source health IT products, known collectively as ‘clinical also point to the most effective ways to capture and display that data, groupware’ applications [36,37]. but capture, display and analysis should be as flexible as possible.

INPUTS STRUCTURE OUTPUTS (VIEWS)

Aggregate views Patients Person: Disease registries [templates or demographics HEDIS interface social structure Quality assessment terminologies] goals, preferences Problem(s): Co-morbidity current/active severity Aggregate longitudinal views Clinical Modifiers: Prior probabilities Clinicians prevention Posterior probabilities [natural language, risk factors Episode analysis interface Significant events Risk factor-to-disease terminologies, Actions (’Process’): classifications] Decisions Cross-sectional patient views Interventions Active problems Plans “dashboard” Time: summary [CCR] Automated Episode structure severity monitoring data feeds Data import/export: prompts, reminders [HL7, XML] Exchange protocols visit view [template]

Longitudinal patient views episode history co-morbidity

Figure 4 Inputs, structure, and outputs in a User-defined views primary care data model to support the patient- Third-party payors centred medical home. Source: Phillips, R.L., Statistical reporting Patient safety Klinkman, M.S. and Green, L., 2007.

A group of primary care leaders in the USA have produced a have been made in the USA to collaborate with PHR vendors such first draft of a data model to support the PCMH [38]. The model, as Microsoft to develop interoperable software as part of the clini- presented in Fig. 4, consists of five domains and is intentionally cal groupware approach. The goal here is to develop next- patient-centred. This model moves beyond ‘diagnosis’, including generation health IT that is interoperable and fit-for-purpose for patients’ own expectations, needs and priorities – their reasons for patient-centred care. encounter – as integral elements representing the personal context. These elements can be captured with the use of the International Think far beyond the encounter as the unit of Classification of Primary Care [35]. health care delivery Clinician–patient interactions will increasingly be indirect and Identify and operationalize key domains and asynchronous, through telephone, email, secure electronic portals data elements of the ‘patient side’ or other means. Ensuring that the array of health IT applications As investigators, social scientists and patients collaborate to that will collect patient-centred data are interoperable will require develop the full content of person-centred diagnosis and care, we simple standards and robust technology to move information from must agree upon the most important (and recordable) elements, place to place. We can learn how best to do this from collective then work to find ways that each can be reliably integrated into experience ranging from the British NHS to small pilot tests of everyday primary care work flow. If patient-centred data are not practice-based software. core, they will not become part of care. Conclusion Collaborate with EHR – and PHR – vendors to We are intentionally taking the long view here, with the caveat that implement standards advances in health information technology may provide new ways Once an acceptable data model and core patient-centred data ele- to integrate person-centred care: for example, advances in knowl- ments are in hand, we will need to work with any willing vendors edge management may improve our ability to build limited data to develop the capacity to implement them in EHRs and/or per- decision support tools into software. But the work agenda laid out sonal health records (PHRs) intended for use in primary health in the previous section should remain fundamentally the same care. In some countries, where primary care EHRs have been regardless of technological advance. developed by primary care clinicians or by collaborations between In the end, the core task of general medical practice is to meet clinicians and IT experts, this may be an easier task than in coun- the needs of people living in communities. We must find a way to tries where collaboration is not as well established. Initial efforts bring the patient’s own voice into our work.

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From the Second Geneva Conference on Person Centered Medicine Person-Centered Medicine: From Concepts to Practice

Person-centred integrative carejep_1583 371..372 C. Robert Cloninger MD

Wallace Renard Professor of Psychiatry, Genetics and Psychology and Director of Sansone Family Center for Well-Being, Washington University School of Medicine, St. Louis, Missouri, USA

Keywords Abstract awareness, hope, respect, well-being Rationale, aims and objectives The essential ingredients of effective person-centred Correspondece integrative care are described and its benefits are documented in terms of influence on Professor C. Robert Cloninger compliance with care, drop-out rates, enhancement of well-being and reduction in ill-being. Washington University School of Medicine Method Prior literature on efficacy of person-centred treatment in medicine and psychol- Department of Psychiatry ogy is reviewed and related to definitions of health and well-being. Campus Box 8134 Results The general characteristics of person-centred care involve multiple elements. 660 South Euclid Avenue First, the doctor must be aware of the personality of the individual in order to enter into St. Louis, MO 63110 a humanistic dialogue with the person. Second, for a therapeutic alliance, there must be USA agreement that doctor and patient are working toward common goals. Third, calm reassur- E-mail: [email protected] ance, hope, and respect need to be communicated. Fourth, the doctor and patient need to be empathic and reflective. Fifth, they must identify and implement practical means of Accepted for publication: 11 October 2010 promoting health with available resources and a realistic understanding of facts. Conclusion Awareness of who the person is in a therapeutic encounter allows cultivation doi:10.1111/j.1365-2753.2010.01583.x of a humanistic dialogue, which in turn accounts for most of the variation in clinical outcomes.

The practice of person-centred medical care requires doctors to centred doctor shares his or her knowledge and expertise with examine basic questions about the scope of medical responsibility, the larger community so that society as a whole can be informed the nature of the therapeutic doctor–patient relationship and the in making decisions about how best to promote health and types of procedures that are appropriate in treatment and health well-being. promotion. Health is defined by the WHO as a state of physical, What procedures can the person-centred doctor apply that are mental, social and spiritual well-being [1]. Well-being is more than practical and effective? First, the doctor needs to know who the absence of disease; it is a state of being healthy, happy, produc- person he or she is encountering really is. The doctor must under- tively contributing to one’s community and satisfied with one’s stand the personality of the individual including their emotional life. Health and well-being then include strength and resilience of style, their goals and values, their strengths and weaknesses physi- the body, thoughts and psyche of a person as a whole. cally, mentally, socially and spiritually [4]. Once well-being is recognized as an integral part of health care, Second, there must be a therapeutic alliance in the sense of a then health promotion must address the whole art and science of relationship of mutual trust and respect in which the doctor and living well. However, attention to the art and science of living well patient agree to work together towards common goals [5]. does not mean that every aspect of life becomes the full responsi- Third, therapeutic encounters are enhanced by reassurance and bility of a doctor as a controlling authority who fights against calm. Most encounters with doctors involve stress-related com- anything risky as wrong or disease-promoting. Human beings only plaints and result in rushed encounters and prescriptions with flourish when they are self-directed, cooperative and self- which compliance is poor, creating a cycle that is costly and transcendent [2]. In other words, mental health has been defined as ineffective. People are often unable to think rationally when they ‘a state of well-being in which the individual realizes his or her are acutely distressed or in a state of negative emotion, such as own abilities, can cope with the normal stresses of life, can work anxiety or anger. The emotional brain actually short-circuits the productively and fruitfully, and is able to make a contribution to function of rational cognitive processes when a person is dis- his or her community.’ [1,3] Consequently, it is ineffective to treat tressed [2]. Consequently, doctors need to communicate in a reas- a human being as a dependent child who follows submissively the suring and hopeful manner. Brief relaxation methods can be taught orders of authorities. Each human being has an intrinsic dignity as in a few minutes, and this provides an inexpensive tool for pro- a result of their capacity for self-awareness and self-actualization. moting an essential step along the path to well-being. A key check Consequently, the person-centred doctor becomes a consultant and on this step is to ask ‘Are the doctor and patient calm and adviser to assist people in their quest to live well. The person- respectful?’

Fourth, once a person is calm, they can face and accept unpleas- Even in psychotherapy, the addition of specific exercises for ant facts, such as information about a possible disease or abnormal relaxation and meditation to facilitate growth in self-awareness has test results. Such acceptance of facts is essential for undistorted greatly reduced drop-out and relapse rates from cognitive behav- analysis and reflection on how to proceed with treatment or ioural therapy, substantially improving the development of well- changes in lifestyle [6]. If the patient is incapacitated or unable to being [11]. Certainly then, there is need for combining medical decide for him- or herself, family members or guardians will need and psychobiological expertise with non-specific common factors to be calmed and informed so that they can rationally understand in person-centred care. Given how frequent stress-related com- and consider how to proceed. A key check on this step is to ask plaints are in medicine, it is likely that the common factors that ‘Are the doctor and patient empathetic and reflective?’ account for most of the outcome in psychotherapy and the prin- Fifth, as soon as possible, it is desirable to reflect on what ciples for the development of well-being are also broadly appli- changes in lifestyle would be helpful in promoting health or reduc- cable to all person-centred care. ing the burden of disease. It can be empowering for a person to take responsibility and act in ways that are purposeful and References resourceful. Such empowerment improves the mental attitude of 1. WHO (2001) Mental Health: New Understanding, New Hope. The the person, fosters hope, and these attitudinal shifts augment the World Health Report. Geneva: World Health Organization. benefits of other lifestyle changes, rather than fostering fear and 2. Cloninger, C. R. (2004) Feeling Good: The Science of Well Being. dependency [7]. A key check on this step is to ask ‘Are the doctor New York: Oxford University Press. and patient genuine and aware of how to promote health?’ 3. Hermann, H. & Jane-Llopis, E. (2005) Mental health promotion in According to Carl Rogers, effective person-centred psycho- public health. Promotion & Education, 12, 42–47. therapy depends largely on three key elements in the therapeutic 4. Cloninger, C. R., Svrakic, D. M. & Przybeck, T. R. (1993) A psycho- encounter: (1) respect or unconditional positive regard; (2) biological model of temperament and character. Archives of General empathy; and (3) genuineness [8,9]. These three common factors Psychiatry, 50, 975–990. 5. Horvath, A. O. & Simmonds, B. (1991) Relation between working in psychotherapy also correspond to the three general principles alliance and outcome in psychotherapy: a meta-analysis. Journal of for the development of well-being: (1) Working in the service Consulting and Clinical Psychology, 38, 139–149. of others, which fosters trust, mutual respect and hopeful self- 6. Hayes, S. C., Follette, V. M. & Linehan, M. M. (eds) (2004) Mindful- directedness; (2) Letting go, which fosters cooperativeness, ness and Acceptance: Expanding the Cognitive-Behavioral Tradition. compassion and empathy; and (3) Awareness, which fosters genu- New York: Guilford Press. ineness or authenticity and leads to health promotion [2]. Like- 7. Hermann, H., Saxena, S. & Moodie, R. (eds) (2005) Promoting wise, cognitive behaviour therapy, which incorporates these Mental Health: Concepts, Emerging Evidence, Practice. Geneva: common elements when effective, is beneficial even in patients World Health Organization. with marked somatization [10]. However, cognitive behaviour 8. Lambert, M. J. (1986) Implications of psychotherapy outcome therapy has a high drop-out and relapse rate unless it is integrated research for eclectic psychotherapy. In Handbook of Eclectic Psycho- therapy (ed. J. C. Norcross), pp. 436–462. New York: Brunner/Mazel. with the general principles of well-being [11]. 9. Lambert, M. J. (ed.) (2004) Bergin and Garfield’s Handbook of Psy- More work is needed but it appears likely that the general chotherapy. New York: Wiley. conditions for well-being are also the essential ingredients of 10. Kroenke, K. & Swindle, R. (2000) Cognitive-behavioral therapy for effective person-centred care in medicine generally. Technical pro- somatization and symptom syndromes: a critical review of controlled cedures enhanced outcomes only to a modest degree in psycho- clinical trials. Psychotherapy and Psychosomatics, 69, 205–215. therapy, but may be of greater importance with specific medical 11. Cloninger, C. R. (2006) The science of well-being: an integrated disorders. There is now growing evidence and recognition that all approach to mental health and its disorders. World Psychiatry,5, aspects of a human being (body, thoughts and psyche) function 71–76. interdependently as a whole, not as separate parts. For example, 12. Hintsanen, M., Rulkki-Raback, L., Juonala, M., Vilkari, J. S., the most powerful predictors of coronary artery disease are the Raitakari, O. T. & Keltikangas-Jarvinen, L. (2009) Cloninger’s temperament traits and preclinical atherosclerosis: the Cardiovascular personality variables, not somatic risk factors like low-density High Risk in Young Finns Study. Journal of Psychosomatic Research, lipoprotein (LDL) cholesterol [12]. Likewise, depression and 67, 77–84. social isolation are stronger predictors of outcome after myo- 13. Carney, R. M., Blumenthal, J. A., Stein, P. K., Watkins, L., Catellier, cardial infarction than are somatic risk factors [13]. These D., Berkman, L. F., Czajkowski, S. M., O’Connor, C., Stone, P. H. & examples illustrate the importance of integrative psychobiological Freedland, K. E. (2001) Depression, heart rate variability, and acute approaches for medical care in general. myocardial infarction. Circulation, 104, 2024–2028.

From the Second Geneva Conference on Person Centered Medicine Person-Centered Medicine: From Concepts to Practice

The Patient-Centred Medical Home in the USAjep_1607 373..375 Ted Epperly MD

Program Director and CEO, Family Medicine Residency of Idaho, Boise, Idaho, USA, Clinical Professor of Family and Community Medicine, University of Washington School of Medicine, Seattle, Washington, USA and Past President and Immediate Past Chairman of the Board, American Academy of Family Physicians, Leawood, Kansas, USA

Keywords Abstract Medical Home, Patient-Centred, Patient-Centred Medical Home, PCMH Rationale The Patient-Centred Medical Home (PCMH) is a new model of health care delivery in the USA at the primary care level that emphasizes integrated and coordinated Correspondence care around the patients’ needs and desires. The PCMH emphasizes a practice-wide team Dr Ted Epperly approach to provide high quality, accessible and cost-effective health care for acute, Family Medicine Residency of Idaho chronic and prevention-oriented problems. 777 N. Raymond Method This article is a descriptive overview of the PCMH in the USA. Boise, ID 83704 Results The data on the PCMH have shown decreased mortality, morbidity and increased USA patient and physician satisfaction with care. Additionally, quality of care and patient access E-mail: [email protected] have improved. There has been decreased emergency room utilization, decreased hospitalization and decreased cost per patient. Accepted for publication: 8 November 2010 Conclusion The PCMH in the USA has been an outstanding transformative model change to re-centre health care back to cost-effective, quality, accessible primary care. doi:10.1111/j.1365-2753.2010.01607.x

Introduction 1 a personal medical home for patients; 2 patient-centred care; The Patient-Centred Medical Home is an idea whose time has 3 a team approach; come in the USA. Embodied in the concept of the Patient-Centred 4 elimination of barriers to access; Medical Home is a new way to deliver health care that is person- 5 advanced information systems; centred and is at the epicentre of the transformation of the US 6 redesigned offices; health care system. Health care in the USA has become frag- 7 a whole-person orientation; mented, uncoordinated and costly. The Patient-Centred Medical 8 care provided within a community context; Home provides three constructs for health care reform. First, it 9 emphasis on quality and safety; offers a delivery system reform that places the patient at the centre 10 enhanced practice finance, and of the health care system with a primary care team that is doctor- 11 a commitment to provide a broad scope of family medicine led. Second, it provides a financial construct in which to better pay service that was comprehensive. primary care physicians for the valuable service they provide in To help operationalize this newly emerging concept of the integrating and coordinating this care. Thirdly, it provides a politi- Patient-Centred Medical Home, the four primary care disciplines in cal construct in which it visions what a new transformed health the USA (the American Academy of Family Physicians, the Ameri- care system will look like. can College of Physicians, theAmericanAcademy of Pediatrics and the American Osteopathic Association) came together in 2007 to The future of family medicine create the Joint Principles of the Patient-centred Medical Home [2]. These seven Joint Principles are the following: The Future of Family Medicine Report [1] called for the develop- 1 A personal physician who coordinates all care for patients and ment of a strategy to transform and renew the specialty of family leads the team. medicine to meet the needs of people and society in a changing 2 Physician-directed medical practice with a coordinated team of environment. Without this change in the larger health care system professionals who work together to care for patients. and in the delivery model of practice, it was believed that primary 3 A whole-person orientation, which is the key to providing com- care and family medicine could possibly become non-existent in prehensive care. the next 15 to 20 years [1]. A new model of family medicine was 4 Coordinated care that incorporates all compliments of the called for. This model would contain 11 features: complex health care system.

5 Quality and safety in which medical practices voluntarily Home and ‘person’-centred care. The use of person versus patient engage in quality improvement activities to ensure patient safety is reflects more of a proactive, empowered, holistic approach. It always being met. focuses more on health of the individual as opposed to a dependent 6 Enhanced access to care (i.e. open access scheduling and com- and reactive sick care approach, which can be implied by the term munication mechanisms). patient. For these reasons, person-centred care captures more of 7 Fair and balanced payment in which reimbursement is reflective the spirit of the integrated whole person. of the true value of coordinated care and innovation. The data to date have been excellent in regards to the outcomes These seven Joint Principles were not only approved by all four from the Patient-Centred Medical Home. Multiple studies have of these primary care organizations, but by the American Medical shown excellent return on investment. Mortality, morbidity, Association. They have been championed by the Patient Centered medication use and per capita expenditures have been shown to Primary Care Collaborative, which is an organization that repre- decrease [3]. At the same time, patient satisfaction and greater sents over 750 organizations from big business, to insurance com- equity in health care have been shown to increase [3]. In addition panies, to physician organizations, to consumer groups, to unions to quality of care, patient experience, care coordination and patient [2]. They all have as their purpose to re-centre the US health care access all improving, there has been decreased emergency room system on primary care and the Patient-Centred Medical Home utilization by 15–50%, decreased hospitalization by 10–40% and at its epicentre. The true value of the Patient-Centred Medical decreased cost per patient of approximately $835 per year [4–10]. Home represents both a place of care (as it is a practice that so gets designated) but even more importantly, the Patient-Centred Conclusion Medical Home represents a process of care, which is long overdue in US health care. This process consists of integration and coor- In conclusion, the Patient-Centred Medical Home has become a dination of care through trusted physician relationships to help the central feature of the US health care system reform. It has met patient navigate the complexity of health care and the US health what was called for in the Future of Family Medicine Report as care system. Acute, chronic and preventive conditions are all dealt the delivery model reform that was needed. The Patient-Centred with proactively by the team located in the Patient-Centred Medical Home is an idea whose time has come to re-centre the US Medical Home for the good of the patient. These trusted relation- health care system on what we’re trying to do for patient’s care and ships are built on shared responsibility between the physician and for the people of our country. The data support that it is moving our the patient so that both are held accountable for quality outcomes. health care system to be more accessible, higher quality, more satisfying and less costly. It is doing so by leveraging relationships A new model for medical practice and trust in a wellness and preventive approach of getting people to the right care location to be seen by the right physicians at the The Patient-Centred Medical Home is patient-centred and right time for the right reasons. It is helping people sort out what physician-directed. It builds on the core foundation of family they need and maybe even more importantly, what they don’t medicine and primary care, which has comprehensive, continuous need. The concept of patient centredness will most likely evolve to and relationship-based care at its basic level. The Patient-Centred person centredness with time and the USA will continue to refine Medical Home then adds on quality measures such as a culture of the concepts of the Patient- or Person-Centred Medical Home as it improvement, performance measurement and reliable systems to goes forward to meet the complex health care needs of the US collect information in order to provide patients what they need. It citizens in a rapidly changing environment. then adds the patient experience, which is measured by convenient access, personalized care and care coordination so that patients are References more satisfied with their care. It then adds on practice organization in the form of financial management, personnel management 1. Martin, J. C., Avant, R. F., Bowman, M. R., et al. (2004) The future of and clinical systems so that the practice works efficiently. It then family medicine. Annals of Family Medicine, 2 (Suppl. 1), S3–32. adds on health information technology that consist of business and 2. Patient Centered Primary Care Collaborative (2006) http://www. pcpcc.net (last accessed 26 November 2010). clinical process automation, connectivity and communication, 3. Starfield, B., Shi, L., Grover, A. & Macinko, J. (2005) The effects of evidence-based medicine support, and clinical data analysis and specialist supply on populations’ health. Health Affairs, W5, 97–107. representation so that information is managed effectively. All of 4. Steiner, B. D., Denham, A. C., Ashkin, E., Newton, W. P., Wroth, T. these layers of the Patient-Centred Medical Home are done to & Dobson, L. A. Jr. (2008) Community care of North Carolina: provide great outcomes! These outcomes are good for patients so improving care through community health networks. Annals of Family that the patients enjoy better health and the patients share in health Medicine, 6, 361–367. care decisions. It is good for physicians so that physicians focus on 5. Mercer (2008) Executive summary, 2008 community care of North delivering excellent medical care. It is good for practices so that Carolina evaluation. Available at: http://www.communitycarenc.com/ the team works effectively together. It also allows the resources to PDFDocs/Mercer%20ABD%20Report%20SFY08.pdf (last accessed support the delivery of excellent patient care. It is also good for 26 November 2010). 6. Institute for Healthcare Improvement (2009) Health Partners uses payers and employers in that it ensures quality and efficiency, and ‘BestCare’ practices to improve care and outcomes, reduce costs. avoids unnecessary costs. Available at: http://www.ihi.org/NR/rdonlyres/7150DBEF-3853- The Patient-Centred Medical Home is the concept that the 4390-BBAF-30ACDCA648F5/0/IHITripleAimHealthPartners USA is now beginning to use to embody the transformation of SummaryofSuccessJul09.pdf (last accessed 26 November 2010). the US health care system around patient centredness. Perhaps a 7. Geisenger Health System (2009) Presentation at White House round- more appropriate term would have been ‘Person’-Centred Medical table on Advanced Models of Primary Care. August 10, 2009.

8. Institute for Healthcare Improvement (2009) Genesys HealthWorks id&blobtable=MungoBlobs&blobwhere=1239162002481&ssbinary= integrates primary care with health navigator to improve health, true (last accessed 26 November 2010). reduce costs. Available at: http://www.ihi.org/NR/rdonlyres/ 10. Dorr, D. A., Wilcox, A. B., Brunker, C. P., et al. (2008) The effect of 2A19EFDB-FB9D-4882-9E23-D4845DC541D8/0/IHITripleAim technology-supported, multidisease care management on the mortality GenesysHealthSystemSummaryofSuccessJul09.pdf (last accessed 26 and hospitalization of seniors. Findings updated for presentation at November 2010). White House roundtable on Advanced Models of Primary Care. 9. Colorado Department of Health Care Policy and Financing (2008) Journal of the American Geriatrics Society, 56 (12), 2195–2202. Colorado Medical Home. Available at: http://www.colorado.gov/cs/ August 10, 2009. Satellite?blobcol=urldata&blobheader=application%2Fpdf&blobkey=

From the Second Geneva Conference on Person Centered Medicine Person-Centered Medicine: From Concepts to Practice

A personal approach to person-centred paediatric carejep_1584 376..378 William J. Appleyard MD FRCP (Lon) FRCPCH (UK)

Hon Secretary to the Board of Trustees, International Association of Medical Colleges, Kent, UK

Keywords Abstract attunement, empathy, person, prevention, virtuous circle, well-being Respecting children in their own right as individual ‘persons’ improves their care and their well-being. Better educational progress by each child is achieved. This in turn improves the Correspondence economic potential for the nation. Each child has physical, mental, emotional, social and Dr William J. Appleyard spiritual needs. Early attunement between the parent and the child is crucial and an International Association of Medical approach that integrates all the elements that affect the child as a person has been found to Colleges be effective in promoting positive health outcomes. Thimble Hall Blean Common Kent TT2 9JJ UK E-mail: [email protected]

Accepted for publication: 11 October 2010 doi:10.1111/j.1365-2753.2010.01584.x

Each child is a unique individual who has needs, which include Some insight can be found in a study based in Turkey about those that are physical, mental, emotional, social and spiritual in 30 years ago on the views of 20 000 mothers in nine different the form of ‘love’. countries about the value of their children [5]. Their responses The greatest worldwide challenge today remains the health of were classified under three headings – utilitarian, social and our children [1]. This determines the social educational and eco- psychological. nomic growth of all nations [2]. The most cost-effective invest- The utilitarian group included those who rated the economic ment nations can make is to focus on all three elements of health and material benefits arising from children both when they are of maintenance and disease prevention namely primary, secondary child age and when they grow up to be their security in old age. and tertiary prevention [3]. The social group valued the general social acceptance that Medical care needs to start with the child and support systems normal adults are given when they have children and their desires that maintain the integration of all those elements upon which for the continuation of the family. health and well-being are founded. Only the context will differ The psychological group was those mothers who valued their within different countries. children for the love, joy, pride and companionship that the fulfil- There is plenty of evidence that such an integrated approach is ment of the children themselves brought. the most effective health measure [3]. The children in the ‘utilitarian’ group who had their children to I observed this at first hand in Kerala with the Integrated Child meet the perceived needs of themselves and their families rather Health Scheme originally supported by the WHO 20 years ago than the needs of the children themselves had the greatest number where the promotion of health was partnered with social and of children and the highest death rate. educational support in the village community. Whereas those mothers who value their children as individuals UNICEF cause quite a stir with their Report Card 7 from their in their own right had fewer children and fewer died. Innocenti Research Centre in Italy, which gave an overview of It is interesting that those values of love joy and companionship Child Wellbeing in a list of 21 ‘rich’ OECD countries with the are more part of a person’s ‘spirit’ difficult to measure, usually USA [4]. Six dimensions were analysed from each countries’ own discounted in health care but actually very important. figures for material well-being, health and safety, educational We need to rediscover the research finding of John Bowlby [6] well-being, family and peer relationships, behaviours and risk and and others that a child’s first relationship, the one with the mother, subjective well-being. Of the 21 countries the UK came bottom acts as a template that permanently moulds the individual’s capac- of the table. ity to enter into all later emotional relationships.

The crucial elements are early attunement or essentially what consequence of learning to be with others and taking to heart what we understood as ‘bonding’ and the development of empathy [7]. we have seen and heard. The child is a witness of ‘grown up Attunement takes place when the parent and child are emotion- morality and looks for clues as to how one ought to behave from ally functioning ‘in tune’ with each other and where the emotional parents and teachers making choices, talking to people showing in needs of love acceptance and security are met. Without satisfactory action our basic assumptions, desires and values and thereby early attunement to the primary care giver, the development of telling these young observers more than we realize. empathy can be greatly impaired. So these concepts need to be woven into the support we give to Empathy entails the ability to step outside oneself emotionally families in their children’s journey from infancy through adoles- and be able to suppress temporarily one’s own (selfish) perspective cence. We are paying a very heavy price for not doing so [11]. The on events to take another’s. It is present when the observed expe- cost of intervening when everything has broken down is so much riences of others come to affect our own thoughts and feeling in a more – by a factor of between 10 and 20 times depending on the caring fashion. When a parent consistently fails to show any study. When money is tight, we cannot afford not to help. empathy with the child’s expression of particular emotions, the Allen and Duncan Smith’s have proposed a system of integrated child can drop those emotions from his or her repertoire. support based on a ‘virtuous ‘circle from the experience in the city Empathy is also perceived as a prime requirement for a citizen of Nottingham [9]. They suggest a focused continuing theme and to be of the law-abiding type. scheme of a Prenatal Package, Post Natal Support, Preschool Sure We must also remind ourselves that to the best of current knowl- Start Children’s Centres and Primary School follow on pro- edge the sensitive ‘window’ for emotional sensitivity and empathy grammes, and at Secondary School ante drug and alcohol and lies within the first 18 months of life and these skills are shaped by pre-parenting skilling. the primary care giver. Our brains greatest capacity to be change or Being both socially well adjusted and employed leads to: be rewired is in the first 3 years [8]. • lower levels of addictive behaviour; Daniel Goleman, the author of Emotional intelligence, main- • lower likelihood of being trapped in poverty and low-quality tains that empathy builds on self-awareness first and that the more housing; aware we are of our own feelings the more skilled we will be at • greater likelihood of having only the number of children people reading the emotions of others [9]. can parent effectively and afford to support without sliding into So we need good parents, good parenting and parent dependency, and empowerment. • greater likelihood of people being naturally good parents to their own children and thereby feeding into a positive rather than nega- Children need love and boundaries tive generation cycle [12]. within which to feel secure This needs underpinning by a ‘spiritual (concepts of love) and moral (what is right or wrong) approach. As children develop their cognitive or general thinking skills there In the development of medical care for children all these con- is an expectation that they will start to conform to the morals set cepts need to be applied locally at individual and community level within the family and wider society. We can get some insights from starting with the child as a person. the differing perspectives of three psychological theories: • Primary prevention means reducing the incidence of disorders • Freud claims that the quality of relationship the child has with and diseases. The most effective of which are ensuring adequate his/her parent/s greatly affects the way the child develops morally. nutrition, a comprehensive immunization programme tailored to • The Social Learning theory states that children initially learn the local needs, anticipatory guidance of advice and support for how to behave morally through modelling (imitating appropriate parents and children, accident prevention, dental prophylaxis. adult behaviour). • Secondary prevention aims at reducing the prevalence of disease • Cognitive-developmental theories promoted by Piaget and and poor health by early detection and prompt and effective inter- Kohlberg, claims that a child’s ability to reason morally depend on vention. Awareness and screening are some of the means that early his/her general thinking abilities. identification can be achieved. The first three criteria of Wilson Dr Robert Coles, a Professor of Psychiatry at Harvard, in his book and Junger’s 1968 WHO criteria for the evaluation of screening the Moral Intelligence of Children widens the practical issues in a programmes are that there should be a potential health gain, and narrative and discursive way [10]. A child is shaped at the very acceptable treatment or intervention and facilities should be avail- start of life by the values of certain adults. Even before a boy or girl able, the latter raising local issues [13]. is born, his or her parents are already giving expression to their • Tertiary prevention aims to minimize suffering and reduce values that will matter to their son or daughter. A women tries to impairments and disabilities caused by disease. Many acute and think of others, not only of herself, so she watches what she eats chronic diseases come under this area. and drink and does not smoke not only out of concern for herself The great advantage on the former Integrated Child Development but with her future child in mind. A man takes an interest in the Scheme in Kerala was that it encompassed all three elements of woman who is carrying his child offering affection comfort and prevention as well as the acute childhood diseases. The scheme reassurance. Both parents are concerned for the third person to was grown from the local community with a locally trained lead arrive. health worker supported by paediatric care. Essential nutrition was And this leads up to what he describes as a ‘golden rule’ – a included with a full immunization programme, parental guidance respect for others, a commitment of mind heart and soul to one’s and family planning. Each individual child was important; each family, local community and nation! Moral intelligence isn’t had their own meticulously kept record. It was starting to have a acquired by ‘dictat’ or by the memorization of rules but as a measurable health impact.

A similar model evolved in the UK at the beginning of the last 5. Kagiteibasi, C. (1998) The value of children: a key to gender issues. century in the form of child health clinics, which at their hay day International Child Health, 9 (1), 15–24. included access to social and educational support through local 6. Bowlby, J. (1969) Attachment and Loss. London: Hogarth Press. authority services. 7. Allen, G. & Smith, I. D. (2008) Early Intervention – Good Parents, As some of the measurable indices in both ‘cases’ were reduced, Great Kids, Better Citizens. London: The Centre for Social Justice. 8. Shore, R. (1997) Rethinking the Brain – New Insights into Early the integrated idea was abandoned. It has begun to be resuscitated Development. New York: Families and Work Institute. again many years later in a different primary care context and 9. Goleman, D. (1998) Emotional Intelligence. New York: Bantam seems to be gaining favour with the WHO again with their initia- Books. tives on people-centred medicine [14]. 10. Coles, R. (1997) The Intelligence of Children. London: Bloomsbury. 11. Appleyard, W. J. (1998) The rights of children to healthcare. Journal References of Medical Ethics, 24, 292–293. 12. Cunha, F., Heckman, J. J., Lochner, L. & Masterov, D. V. (2005) 1. United Nations Children’s Fund (2009) The State of the Worlds Interpreting the Evidence of Life Cycle Skill Formation. Cambridge Children. New York: UNICEF. MA: NBER Working Paper. 2. Sachs, J. D. (2001) Macro Economics and Health. Investing in Health 13. Wilson, J. M. G. & Jungner, G. (1968) Principles and Practice of for Economic Development. Geneva: WHO. Screening for Disease. Geneva: WHO. 3. Hall David, M. B. (1996) Health for All Children, 3rd edn. Oxford: 14. WHO. Integrated Management of Childhood Illness (IMCI). Oxford Medical Edition. Available at: http://www.who.int/child_adolescent_health/topics/ 4. UNICEF (2007) Innocenti Research Centre Report Card 7. An over- prevention_care/child/imci/en/index.html (last accessed October view of child well-being in rich countries. New York: UNICEF. 2010).

From the Second Geneva Conference on Person Centered Medicine Person-Centered Medicine: From Concepts to Practice

Person-centred medicine for older peoplejep_1585 379..380 Jon Snaedal MD

Associate Professor in Geriatric Medicine, Past President of the World Medical Assocication, Geriatric Department, National University Hospital of Iceland, Reykjavik, Iceland

Keywords Abstract old age, person-centred medicine It can be argued that person-centred medicine is more important in old age than it is in Correspondence young or middle age. The older patient is in many respects more of an individual than he Professor Jon Snaedal was in his younger age as life experiences including diseases have shaped each person for Geriatric Department a long time. For evaluation of an older person, the team approach has been shown to be the National University Hospital of Iceland most efﬁcient method. Cognitive factors and social support must be addressed speciﬁcally. 101 Reykjavik Iceland E-mail: [email protected]

Accepted for publication: 11 October 2010 doi:10.1111/j.1365-2753.2010.01585.x

Geriatric Medicine evolved as a specialty from both Rehabilitation setting the core team consists of 4–5 professionals, a doctor, a Medicine and Internal Medicine. The focus was initially on the nurse, a social worker and most often both a physiotherapist and an abilities and disabilities of the older person but it soon became occupational therapist. Other professionals connected to the team obvious that in order to be successful, the patient’s morbidity had might be specialists in nutrition and on language. The doctor is to be taken into account as well. Most often a medical illness was typically the leader of the team but other health professionals have the reason for his disabilities or an important contributing factor. their own professional responsibility and are autonomous in their The sick and frail older person came to be described as a geriatric work. For successful work the dynamics of the team has to be patient and it was soon evident that his features were distinctive congruent and ﬂexible in order to address the various needs prop- from younger patients in many respects. Even though a medical erly. Each professional must value the work of another and mutual illness commonly is the main reason for his condition, the geriatric respect is crucial. Good knowledge of the strengths and weak- patient most often has multiple health problems and it has to be nesses of each profession is also necessary. A well functioning decided to what extent each ailment should be treated. Treatment team can be described as interdisciplinary meaning that the work of many medical conditions at the same time leads to polyphar- of each member of the team is closely linked to the work of other macy and in most surveys; the number of medications of a typical team members. A more loose collaboration as is seen in less well geriatric patient is increasing leading to various problems of its functioning teams can be described as multidisciplinary, each own. Many systems for addressing this problem have been pro- member acts more or less on his own taken into consideration the posed [1]. Furthermore, the symptomatology in diseases that occur needs of the patient but ignoring how other professionals are in the geriatric patient is more vague than in younger patients and meeting those needs. The role of the leader is to consolidate the sometimes misleading. Cognitive factors contribute signiﬁcantly work of the team members, in other words to have the team to the successes or failures of treatment. Last but not least, the functioning in an interdisciplinary way. person behind the symptomatology is more unique than in other For successful treatment of the geriatric patient, it is necessary age groups as his/her lifestyle and former diseases make each for the team to know the person behind the disease(s). This is more patient more special than is the case in younger patients. Social important than in the treatment of conventional internal medicine, and personal factors are therefore often guiding the aims of the most often of younger patients, as the success of treatment often treatment and even the prognosis for successful treatment and depends on factors related to the patient’s personality rather than independent living. to his disease. Two domains are most important in this regard, the The means by which the geriatric patient is treated is classically psychological health of the patient including his cognitive abili- by teamwork. The constellation of the geriatric team differs ties, and his social support. Dementia is common in the oldest age depending of the type of service, but in the geriatric rehabilitation groups and when present it can make all attempts to treat the

© 2011 Blackwell Publishing Ltd, Journal of Evaluation in Clinical Practice 17 (2011) 379–380 379 Person-centred medicine for older people J. Snaedal patient futile. Cognitive decline that is not severe enough to merit immediate environment. Little or no attempt was made to commu- the term dementia often goes undetected but is nevertheless impor- nicate with the person as such and to come to terms with his tant. Those treating the patient need therefore to evaluate cognition thoughts and wishes. Little attention was given to the fact, as most and more precisely, to what degree cognition has deteriorated and agree to today, that most of the psychiatric symptoms in dementia how. To evaluate the psychological health of the patient is also originate from a person’s coping strategy in a bizarre situation. By of utmost importance. Older persons often tend to explain their understanding the situation of the patient, much more could be symptoms by their chronological age and that makes their contri- achieved than by just looking at the disease symptoms per se [4]. bution to their own treatment suboptimal. Depressive symptoms This in turn has shown to reduce the usage of drugs for the and overt clinical depression are of course great obstacles to treat- psychiatric symptoms, to increase the well-being of the patient and ment success as well. The time used to evaluate a person’s cogni- to increase work satisfaction of the staff [5]. These ideas are tion and to communicate with him is therefore time well spent. The behind many projects in dementia care such as the VIPS concept social support is also of utmost importance for his possibilities and many others [6]. This has not been an easy road as dementia for independent living. For evaluation of social status and support care has not been highly regarded by clinicians and problems it is necessary to involve others such as family members and such as high personal turnover in the care setting is prevalent. It the persons responsible for the social service in the community. can therefore be argued that dementia care, when it is done in the Before doing that the patients’ wishes must be respected. He spirit of Kitwood, is one of the best examples of person-centred knows best to whom he wants to turn for help and he might trust medicine, of the person, for the person, by the person and with the some and mistrust others. According to human rights charters such person [7]. as the Declaration of Lisbon on the Rights of Patients [2], he has the right to know everything regarding his illness, treatment and References prognosis, to decide to what extent he is treated and supported and 1. Haque, R. (2009) ARMOR: a tool to evaluate polypharmacy in the whom to consult in his family or community for his benefit. The elderly persons. Annals of Long Term Care, (17), 26–30. personal preferences of the patient must therefore be respected; 2. World Medical Association: WMA Lisbon Declaration on the Rights of in other words, the personal-centred approach to treatment must the Patient 2005. Available at: http://www.wma.net/en/30publications/ guide the work. 10policies/l4/index.html The demented person is a special challenge in the person- 3. Kitwood, K. & Bredin, K. (1992) Towards a theory of dementia care: centred perspective. Is it possible to communicate with the person personhood and well being. Ageing and Society, 12, 269–287. behind dementia and to learn about his priorities? The answer to 4. Kitwood, T. (1995) Studies in person centred care: building up the this question is yes, if it’s done early enough in the disease process. mosaic of good practice. Journal of Dementia Care, 3 (5), 12–13. This means that in the first phase of dementia the treatment team 5. Tobin, J. (1995) Sharing the care: towards new forms of communi- must address those issues with the patient that might have rel- cation. In The New Culture of Dementia Care (eds T. Kitwood & S. Benson), pp. 10–80. London: Hawker. evance in the coming years. In his pioneer work, Kitwood pre- 6. Brooker, D. (2006) Person Centred Dementia Care, Making Services sented the term personhood in the context of dementia [3]. Until Better. Bradford Dementia Good Practice Series. London: Jessica then, most of the work in this field had focused on medical and Kinsleys Publishers. psychiatric symptoms of the patient and how to respond to those. 7. Mezzich, J., Snaedal, J., van Weel, C. & Heath, I. (2010) Towards The patient was identified by his symptoms and the evaluation was person centred medicine, from disease to patient to person. The Mount directed on those and their relevance to the patient and to his Sinai Journal of Medicine, 77, 304–306.

From the Second Geneva Conference on Person Centered Medicine Person-Centered Medicine: From Concepts to Practice The value of tailored communication for

person-centred outcomesjep_1586 381..383 Sandra van Dulmen PhD

Research Coordinator NIVEL (Netherlands Institute for Health Services Research), NIVEL, Nijmegen, The Netherlands

Keywords Abstract adherence, communication, outcomes, recall, tailored Rationale When entering a consulting room a person becomes a patient with double needs, that is, the need to feel known and understood and the need to know and understand, Correspondece also referred to as affective and instrumental needs, respectively. The fulﬁlment of these Dr Sandra van Dulmen needs highly depends on the communication skills of both doctor and patient, which help Netherlands Institute for Health Services to bridge the inherent distance that exists between these two persons. There is ample Research NIVEL evidence that this bridge becomes stronger the more the communication is tailored to the P.O. Box 1568 person behind the patient. Besides, such tailored communication may also prove to be 3500 BN Utrecht effective for reaching favourable health outcomes. Nijmegen Methods Descriptive study focusing on the value of tailored communication in promoting The Netherlands person-centred instrumental and affective health outcomes. E-mail: [email protected] Results Research shows that tailored communication contributes to health outcomes known to be crucial for recovery and quality of life, that is, information recall, medication Accepted for publication: 11 October 2010 adherence, reassurance and need fulﬁlment. Conclusion There is empirical evidence for the value of tailored communication for doi:10.1111/j.1365-2753.2010.01586.x person-centred outcomes. Communicating in a purposeful way while at the same time respecting patients’ values and feelings should therefore become the standard in health care practice.

Introduction account these differences in life world and personal circumstances as well as the patient’s individual level of comprehen- When seeking health care a person becomes a patient with sion, coping skills, informational needs and emotional needs, double needs, that is, the need to feel known and understood and increases the chance of being heard and of reaching desired the need to know and understand, also referred to as an affective health outcomes. Such a patient-centred approach can therefore and an instrumental need, respectively [1,2]. The fulfilment of be understood as being prerequisite for tailored communication. these needs highly depends on the communication skills of both According to Kreuter et al. [4] tailored information is intended to doctor and patient; a doctor’s adequate, patient-centred commu- reach one specific person and is based on individual character- nication style contributes to signal and identify a patient’s needs. istics related to the outcome of interest, derived from an indi- Likewise, a patient’s open and clear presentation of his reason vidual assessment. Individually tailored information is often for visit adds to an effective and efficient encounter by which a confused with targeted or personalized messages. An interven- patient feels helped, empowered and cared for. Clearly, both tion is targeted when it is intended to reach some specific sub- doctor and patient can be held responsible for the process and group of the general population, usually based on one or more outcome of a health care. By recognizing each other’s valuable demographic characteristics shared by its members. Information role and input, the doctor and the patient together help to bridge is considered personalized when it is adjusted only to the inherent distance that exists between them. There is ample population-based demographic data, for example, the respon- evidence that the doctor–patient bridge becomes stronger the dent’s name [4]. On the basis of the Elaboration Likelihood more the doctor’s communication is adapted to the person Model [5], tailored messages can be expected to yield more behind the patient, that is, to the person with his idiosyncratic favourable health outcomes. Making a message more personally way of reasoning, understanding, feeling and behaving. As a relevant by tailoring, stimulates motivation for thoughtful con- consequence of the differences in background and expertise, sideration, which leads to more stable attitudes [6]. This is sup- patient’s perspectives often clash with the perspectives of the ported by EEG research showing that tailored information doctor [3]. Interpersonal communication, which takes into increases attention rates [7]. The present short paper aims to

© 2010 Blackwell Publishing Ltd, Journal of Evaluation in Clinical Practice 17 (2011) 381–383 381 The value of tailored communication S. van Dulmen provide examples of recent empirical studies underlining the psychological and social topics [16]. However, research shows that value of tailored communication for specific person-centred familiarity – applied in 394 general practice visits – does not health outcomes. influence the content of the communication in terms of medical issues, psychological themes or topics relating to the social envi- Methods ronment. Doctors should therefore be aware of the pitfall that being acquainted with a patient for a long time does not automati- Descriptive study focusing on the value of tailored communication cally guarantee person-centred communication or correct percep- in promoting person-centred instrumental and affective health out- tions of a patient’s informational and affective needs. For clinical comes known to be crucial for recovery and quality of life, that is, practice this implies that exploring cues and checking mutual increased information recall, medication adherence, need fulfil- understanding remain crucial even in long-established doctor– ment and reassurance. patient relationships.

Outcomes of tailored communication Reassurance Research suggests that tailored communication influences person- Positive communication between a doctor and a patient might related outcome in the following ways. influence patient outcomes, especially in patients with minor ailments. Research analysing 524 general practice visits indeed shows that reassurance is related to patients’ better overall health Information recall [17]. In addition, this study also shows that providing a favourable Doctors often need to provide large amounts of information. prognosis is linked to patients feeling better and giving a clear Research in patient education about chemotherapy shows that explanation is related to patients feeling better and less anxious. oncology patients receive information and advices about 82 dif- However, these relationships disappear when patients report a low ferent topics [8]. These patients appear to be able to recall less than mood pre-visit. This suggests that a doctor should be keen on one quarter of these advices correctly [8]. As a consequence, many exploring a patient’s emotional well-being. This is no simple task, oncology patients do not know how to cope with the severe side because an observational study in 97 everyday general practice effects of the treatment that need immediate medical attention and visits indicates that many patients only express their emotional health professionals spend a lot of time without achieving their concerns in an implicit way [18] and doctors explore patients’ goal of educating and empowering patients to become responsible emotional cues most often in a medical way only [19]. Doctor– for their own well-being. Fortunately, it appears possible to teach patient communication is likely to become more person-centred by health professionals how to provide information in a more person- being conscious of a patient’s implicit way of communication and centred and tailored way by restricting the amount of information by exerting self-reflection on one’s one-sided medical approaches. to the main topics and by providing more detailed information only about the topics that patients indicate to be of value to them Conclusion [9]. Person-centred communication asks from a health care professional to be alert on: Medication adherence • Changing circumstances. Also if a patient has known a health Many patients do not use their medication as prescribed. An often care professional for a long time, circumstances may change reported reason is that they lack the knowledge about the necessity resulting in more unhealthy behaviour in your patients, such as and fear side effects [10]. A recent observation study in general medication non-adherence. practice patients with depression, hypertension and asthma/ • Too much information. Many patients can only recall part of chronic obstructive pulmonary diseases shows that doctors discuss what you tell them, so you better restrict the amount of information (non-)adherence in only 20% of their visits [11]. To increase to what patients need to know and want to know. adherence, an open and honest talk about what hinders and facili- • Hidden emotional cues. Many cues are being missed while tates proper use is needed. To this purpose, a person-centred research indicates that negative emotions may hinder a patient to approach is crucial because an adherent patient may have become feel reassured and to trust in a positive outcome. This makes it non-adherent the next day and reasons for non-adherence differ highly relevant to watch out for emotional distress in your patients. between patients [12]. To find out if a patient has difficulties taking medication, a person-centred doctor shows interest, listens care- References fully, takes the patient seriously and asks goal-directed questions in an environment without any shame and guilt. This is expected to 1. Engel, G. L. (1988) How much longer must medicine’s science be yield up to a 19% decrease in non-adherence [13,14]. bound by a seventeenth century world view. In The Task of Medicine: Dialogue at Wickenburg (ed. K. White), pp. 113–116. Menlo Park: The Henry Kaiser Foundation. Need fulfilment 2. Bensing, J. (2000) Bridging the gap. The separate worlds of eviden- cebased medicine and patient-centered medicine. Patient Education Overall, doctors are quite good in fulfilling patients’ needs [15]. and Counseling, 39, 17–25. Still, talking about psychosocial issues seems difficult. Familiarity 3. Boot, C. R., Meijman, F. J. & van Dulmen, S. (2009) Lay knowledge between a doctor and a patient – a proxy measure for personal about the causes of complaints and illness; a study in primary care. continuity – is expected to ‘open up the communication’ for more Health Communication, 24, 346–350.

4. Kreuter, M. W., Strecher, V. J. & Glassman, B. (1999) One size does 12. Van Dijk, L., Heerdink, E. R., Somai, D., Van Dulmen, A. M., De not fit all: the case for tailoring print materials. Annals of Behavioral Ridder, D. T., Sluijs, E. M., Griens, A. M. G. F. & Bensing, J. M. Medicine, 21, 276–283. (2007) Patient risk profiles and practice variation in nonadherence 5. Petty, R. & Cacioppo, J. (1986) The elaboration likelihood model of to antidepressants, antihypertensives and oral hypoglycemics. BMC persuasion. Advances in Experimental Social Psychology, 19, 123–205. Health Services Research,7,51. 6. Bartholomew, L. K., Parcel, G. S., Kok, G. & Gottlieb, N. H. (2006) 13. Vergouwen, A. C., Bakker, A., Burger, H., Verheij, T. J. & Planning Health Promotion Programs, An Intervention Mapping Koerselman, F. (2005) A cluster randomized trial comparing two inter- Approach. San Francisco: Wiley. ventions to improve treatment of major depression in primary care. 7. Ruiter, R. A., Kessels, L. T., Jansma, B. M. & Brug, J. (2006) Psychologie Medicale, 35, 25–33. Increased attention for computer-tailored health communications: an 14. Haskard, K. B., Williams, S. L., DiMatteo, M. R., Rosenthal, R., event-related potential study. Health Psychology, 25, 300–306. White, M. K. & Goldstein, M. G. (2009) Physician communication 8. Jansen, J., van Weert, J., van der Meulen, N., van Dulmen, S., Heeren, and patient adherence to treatment. Medical Care, 47, 826–834. T. & Bensing, J. (2008) Recall in older cancer patients: Treatment 15. Van den Brink-Muinen, A., Van Dulmen, A. M., Jung, H. P. & information and recommendations. The Gerontologist, 48, 149–157. Bensing, J. M. (2007) Do our talks with patients meet their expecta- 9. Van Weert, J., Jansen, J., Spreeuwenberg, P., Van Dulmen, S. & tions? The Journal of Family Practice, 56, 559–568. Bensing, J. (2010) Effects of a communication skills training to 16. Fassaert, T., Jabaaij, L., van Dulmen, S., Timmermans, A., van Essen, improve communication with older cancer patients: A randomized T. & Schellevis, F. (2008) Does familiarity between patient and controlled trial. Critical Reviews in Oncology/Hematology (in press). general practitioner influence the content of the consultation? BMC 10. Van Dulmen, S., Sluijs, E., Van Dijk, L., De Ridder, D., Heerdink, R. Family Practice,9,51. & Bensing, J. (2007) Patient Adherence to medical treatment: a review 17. Fassaert, T., van Dulmen, S., Schellevis, F., van der Jagt, L. & Bensing, of reviews. BMC Health Services Research. BMC Health Services J. (2008) Raising positive expectations helps patients with minor Research,7,55. ailments. BMC Family Practice,9,38. 11. Prins, M., Schoen, T., Doggen, C., Van Dijk, L. & Van Dulmen, S. Het 18. Zimmermann, C., Del Piccolo, L. & Finset, A. (2007) Cues and betrekken van het perspectief van patiënt en voorschrijver bij het concerns by patients in medical consultations: a literature review. verbeteren van de communicatie over geneesmiddelen en therapi- Psychological Bulletin, 133, 438–463. etrouw [Engaging the patient’s and the prescriber’s perspectives in 19. Kappen, T. & Van Dulmen, S. (2008) General practitioners’ responses improving communication about medication and adherence]. NPCF/ to the initial presentation of medically unexplained symptoms: a quan- NIVEL 2008. titative analysis. BioPsychoSocial Medicine,2,22.

From the Second Geneva Conference on Person Centered Medicine Person-Centered Medicine: From Concepts to Practice

Research on person-centred clinical carejep_1608 384..386 Arnstein Finset PhD

Professor, Department of Behavioural Science, Institute of Basic Medical Sciences, Faculty of Medicine, University of Oslo, Oslo, Norway

Keyword Abstract communication Rationale, aims and objectives To give a selective review of empirical studies on person- Correspondence centred clinical care, in particular concerning communication patterns between patients and Professor Arnstein Finset providers. Institute of Basic Medical Sciences Methods Descriptive and selective review of relevant literature. University of Oslo Results Person-centred clinical care may have positive effects on patient satisfaction, POB 1111 Blindern patient adherence, health care utilization, malpractice litigation and health outcome. 0317 Oslo Person-centred communication skills may be promoted by way of communication skills Norway training. E-mail: arnstein.ﬁ[email protected] Conclusion The concept of person-centred care is rare in the empirical literature. Future research should operationalize the concept and design studies of the impact of patient- Accepted for publication: 11 October 2010 centred clinical care. doi:10.1111/j.1365-2753.2010.01608.x

Introduction relationship [9], and a positive approach emphasizing personal resources, coping strategies and health promotion [10]. In this Person-centred clinical care and medicine of – or for – the person paper we will briefly and somewhat selectively review studies on are concepts applied to highlight a novel emphasis on the whole some of these qualities of care, in most cases limited to the study person in medicine, in contrast to a limited focus on disease of communication patterns between patients and providers, most mechanisms and fragmented health care practices [1,2]. But in the often doctors. empirical literature on provider–patient communication and other aspects of clinical care, there are few explicit references to these Person-centred aspects and concepts. There are, however, a number of other, and in some outcome measures sense similar, terms that have been applied to characterize person- centred aspects of clinical care such as patient-centred medicine A number of studies have documented significant associations [3,4], narrative medicine [5] and relationship-centred medicine between some of these aspects of person-centred clinical care and [6]. different outcome variables, such as patient satisfaction, patient The most common concept of these in the research literature on adherence, health care utilization, malpractice litigation and health provider patient communication is probably patient-centred. The outcome. concept of person-centred is wider than patient-centred. Person- Patient satisfaction is by far the type of outcome which is most centredness concerns not only the patient, but includes in a sense heavily researched in the clinical communication literature. Quite also the provider who is also a person. In that sense, it is similar to consistently length of consultation is related to outcome; the the concept ‘relationship-centred’. A person-centred understand- longer the consultation, the more satisfied the patient [11]. Within ing of medicine looks at the patient as a whole person, not reasonable limits provision of time for the patient may be consid- restricted to the role of patient, and opens up a room of reflection ered a person-centred quality of care. on the values of medicine. Both task-oriented and patient-oriented aspects of communica- Because the concept of person-centred medicine seldom is tion are related to satisfaction. Among the more patient-centred applied in actual research on clinical care, we will have to look for qualities of care most consistently related to satisfaction are a other concepts relevant to person-centred medicine, such as non-dominant communication style and much information giving patient-centred communication [3], health provider exploration of [11]. patients’ cues and concerns [7], empathic responses to emotional Patient adherence seems to be a more complex phenomenon needs [8], the ability to establish common ground and a trust than patient satisfaction. Research indicates that adherence

384 © 2011 Blackwell Publishing Ltd, Journal of Evaluation in Clinical Practice 17 (2011) 384–386 A. Finset Research on person-centred clinical care depends more on the patient’s medical condition and other specific However, there are indications that a person-centred clinical care is factors. The most well-documented effects on adherence are found positively related to patient satisfaction, may have a positive effect in studies of technical solutions (simplification of dosage, etc.), on adherence and adequate health care utilization, seems to protect reminders and incentives [12]. However, some aspects of provider against patient complaints and litigation claims, and may have communication behaviour that represent person-centred approach direct positive effects on a number of health outcomes. Moreover, to care have also been found to promote adherence, such as person-centred practices may be promoted by way of communi- adequate information provision, provider empathy [13] and a trust- cation skills training. Future research should be guided by efforts ing provider-patient relationship [9]. to operationalize the concept of person-centred medicine more There are fewer studies on the impact of communication on explicitly and to design studies of the impact of patient- health care utilization. There are some indications that patient- centredness on clinical care. centred communication may reduce the number of consultations and days in hospital, and be associated with continuity of care. In one study, a lack of trust in the doctor was a good predictor of References disenrollment from primary care doctors’ practice, underscoring 1. Mezzich, J. E. (2007) Psychiatry for the person: articulating medi- the importance of a trusting doctor–patient relationship [9]. A cine’s science and humanism. World Psychiatry, 6, 1–3. recent review addressed communication behaviours that were 2. Cox, J., Campbell, A. V. & Fulford, K. W. M. (eds) (2007) Medicine associated with efficiency in medical consultations. The research- of the Person. Faith, Science and Values in Health Care Provision. ers found that both rapport building and the acknowledgement of London: J. Kingsley. social and emotional cues, both examples of person-centred skills, 3. Mead, N. & Bower, P. (2002) Patient-centred consultations and out- were positively associated with communication efficiency [14]. comes in primary care: a eview of the literature. Patient Education and Moreover, there is good documentation that a person-centred com- Counseling, 48 (1), 51–61. munication style may protect against complaints and litigation 4. De Haes, H. (2006) Dilemmas in patient centeredness and shared claims form patients [15]. decision making: a case for vulnerability. Patient Education and Counseling, 62 (3), 291–298. An important area of research is the effect of communication 5. Charon, R. (2004) Narrative and medicine. The New England Journal style on health outcomes such as symptom resolution. There are of Medicine, 350, 862–864. relatively few studies in this area (for review, see [16]). Among the 6. Beach, M. C. & Inui, T. (2006) Relationship-centered care. A con- studies that exist, there is evidence that doctor–patient interaction structive reframing. Journal of General Internal Medicine, 21 (Suppl patterns may be related to a number of outcome indicators, even 1), S3–S8. physiological markers such as blood sugar levels and blood pres- 7. Zimmermann, C., Del Piccolo, L. & Finset, A. (2007) Cues and sure [17]. The research literature on placebo effects has docu- concerns by patients in medical consultations: a literature review. mented mechanisms that may explain how communication Psychological Bulletin, 133, 438–463. behaviour may affect health outcome [18]. 8. Suchman, A. L., Markakis, K., Beckman, H. B. & Frankel, R. (1997) A model of empathic communication in the medical interview. JAMA, Communication skills training 277, 678–682. 9. Safran, D. G., Murray, A., Chang, H., Murphy, J. & Rogers, W. H. Another line of studies is the research on the effect of communi- (2000) Linking doctor-patient relationship to quality outcomes. cation skills training. Although results are mixed, a number of Journal of General Internal Medicine,15S,116. studies indicate that a person-centred approach to clinical care 10. Mjaaland, T. A. & Finset, A. (2009) Communication skills training for may be learned, and that the skills acquired by health care provid- general practitioners aimed to promote patient coping: the GRIP approach. Patient Education and Counseling, 76, 84–90. ers after communication skills training may impact patient 11. Williams, S., Weinman, J. & Dale, J. (1998) Doctor-patient commu- outcome. A recent review concluded that a number of provider nication and patient satisfaction: a review. Family Practice, 15, 480– skills, which may be characterized as person-centred were 492. enhanced after communication skills training, such as eliciting 12. van Dulmen, S., Sluijs, E., van Dijk, L., de Ridder, D., Heerdink, R. & patient concerns, exploring the impact of the illness on patient’s Bensing, J. (2007) Patient adherence to medical treatment: a review of life and expressing empathy [19]. reviews. BMC Health Services Research,7,55. Many interventions include course content which explicitly 13. Kim, S. S., Kaplowitz, S. & Johnston, M. V. (2004) The effects of emphasizes person-centred care, such as the so-called Four Habits physician empathy on patient satisfaction and compliance. Evaluation Approach, developed in the USA within the Kaiser Permanente & the Health Professions, 27, 237–251. system by Richard M Frankel, Terry Stein and others [20]. One of 14. Mauksch, L. B., Dugdale, D. C., Dodson, S. & Epstein, R. (2008) Relationship, communication, and efficiency in the medical encounter. the habits is to elicit the patient’s perspective in the consultation, a Archives of Internal Medicine, 168, 1387–1395. skill often neglected in many consultations [21]. Another person- 15. Levinson, W., Roter, D. L., Mullooly, J. P., Dull, V. T. & Frankel, R. centred habit is to demonstrate empathy. The two other habits are M. (1997) Physician-patient communication. The relationship with to invest in the beginning and the end, respectively, of the consul- malpractice claims among primary care physicians and surgeons. tation. The programme illustrates the emphasis on person- JAMA, 277, 553–559. centredness in communication skills training programmes. 16. Stewart, M., Brown, J. B., Donner, A., McWhinney, D. R., Oates, J., Weston, W. & Jordan, J. (2000) The impact of patient-centered care on Conclusions outcomes. The Journal of Family Practice, 49, 796–804. 17. Kaplan, S. H., Greenfield, S. & Ware, J. E. (1989) Assessing the Because the concept of person-centred is rare in the empirical effects of physician patient interactions on the outcome of chronic literature, caution should be displayed in drawing conclusions. disease. Medical Care, 27, 110–127.

18. Benedetti, F. (2002) How the doctor’s words affect the patient’s brain. encounter: the four habits model. The Journal of Medical Practice Evaluation & The Health Professions, 25, 369–386. Management, 16, 184–191. 19. Rao, J. K., Anderson, L. A., Inui, T. S. & Frankel, R. M. (2007) 21. Krupat, E., Frankel, R., Stein, T. & Irish, J. (2006) The Four Habits Communication interventions make a difference in conversations Coding Scheme: validation of an instrument to assess clinicians’ between physicians and patients. Medical Care, 45, 340–349. communication behaviour. Patient Education and Counseling,62, 20. Frankel, R. M. & Stein, T. (2001) Getting the most out of the clinical 38–45.