Evidence: Helping people share decision making

A review of evidence considering whether shared decision making is worthwhile

June 2012

Identify Innovate Demonstrate Encourage This research was commissioned and funded by the Health Foundation to help identify where and how improvements in healthcare quality can be made. The views expressed in this report do not necessarily represent the views of the Health Foundation.

This research was managed by:

Darshan Patel, Research and Development Manager The Health Foundation [email protected] 020 7257 8000

Author Organisation Contact Debra Da Silva The Evidence Centre [email protected]

© 2012 The Health Foundation Evidence: Helping people share decisions is published by the Health Foundation, 90 Long Acre, London WC2E 9RA ISBN 978-1-906461-40-9 Health Foundation commentary

With roots in the disability rights movement, the Thus, shared decision making is necessary phrase ‘nothing about me without me’ became the because I, and only I, in the context of my life, clarion call of professionals and patients alike at my relationships and my capabilities, can decide the Salzburg Global Seminar in 1998. Their vision what will best meet my needs from the choices was a shift in healthcare from ‘biomedicine’ to available to me. For others, shared decision making ‘infomedicine’, in which people and professionals is justified on the basis of its consequences. It is worked in partnership, contributing equally in an approach to be promoted only if and in those every stage of the health and care journey. circumstances where it has wider system benefits, for example, lower costs. A few years later, Derek Wanless* recommended that, in order to cope with rising demand and costs, Whether we embrace shared decision making the NHS should move to ensure that all patients because of the ethical imperative or because of were ‘fully engaged’ in managing their health status wider benefits, a common factor is that shared and healthcare. decision making reduces unwarranted variation – that is variation driven by provider preference Successive governments have promoted this rather than the variation warranted by personal approach. It is reflected in Scotland’s mutuality preferences or clinical circumstance. Evidence- agenda giving patients rights to involvement in based clinical guidelines address the issue of clinical their care. In England it has been manifested most circumstance, but leave unaddressed the tools recently in the rhetoric of ‘no decision about me and mechanisms to incorporate people’s different without me’ and given a legislative footing in the values and informed preferences into decisions. It Health and Social Care Act 2012, which places new is our beliefs that determine when and how we, as duties on the NHS to promote the involvement of clinicians, researchers, managers or commissioners, patients in decisions about their treatment and care. take those preferences into account. Yet, if we are seeing an emerging consensus Helping people share decisions brings together the between professionals, patients and politicians, we evidence of the impact of shared decision making are not yet seeing a shared agenda for achieving on the quality of healthcare as defined by the this vision. For many, such as those who met in Institute of Medicine’s six dimensions of quality: the Salzburg Global Seminar, shared decision safe, effective, timely, patient-centred, efficient and making is a philosophy as well as a way of doing equitable care. It provides an up-to-date single things. Central to it is the belief that patients have reference point for the state of current knowledge a vital role in the decision making process; that about how shared decision making improves their values and self-determination need to be patients’ knowledge and understanding of risk considered equally alongside scientific knowledge.

*Securing Our Future Health: Taking a Long-Term View, Final Report, Derek Wanless, April 2002

HELPING PEOPLE SHARE DECISION MAKING i and their experience and comfort with decisions; The knowledge and insight into effective shared whether this can improve outcomes; and whether it decision making is increasing. However, it is clear may lead to a more effective allocation of resources. that further action is required. Research funders An important conclusion in the current climate could help by commissioning high-quality research is the recognition that it would be misleading to on the long term benefits and risks of shared promote shared decision making as a panacea for decision making, its short and long term impact the financial challenges facing the NHS. on healthcare resources and the best strategies to embed and implement it. They also have a In drawing together the evidence on shared key role to play in ensuring that definitions and decision making, Helping people share decisions reporting are clear and comprehensive, so that the highlights gaps in current knowledge, such as the interventions and approaches can be adopted and long term cost-effectiveness of shared decision the results replicated. making if, for example, treatment decisions are deferred. There is also little evidence on how it Health Education England can ensure training can impact on domains of quality such as equity at undergraduate and postgraduate level, and patient safety. This lack of evidence does not and throughout professional development to mean that there is no relationship or benefit, but enhance clinical skills in supporting people to that there is currently insufficient research to draw take decisions about their health and healthcare. conclusions. One of the striking findings in this Commissioners and providers can ensure that review is that there is no common definition of programmes that support people to develop their shared decision making in the studies, creating health literacy, and have the confidence to act as significant challenges in understanding and equal partners in their care and treatment, are replicating benefits and drawing conclusions across embedded in local care patient pathways. The multiple studies. NHS Commissioning Board, both in its role as setting the framework for local commissioning This evidence review also clearly demonstrates and as a commissioner itself, can lead the way that putting shared decision making into practice to developing robust and meaningful measures will not be achieved through policy statements: of patient participation in decision making. active steps to change the behaviour of both healthcare professionals and patients are central Through our own work, and in partnership with to its successful delivery. In concert with Helping others, we will continue to inform the debate and to people help themselves, the Health Foundation’s promote a shift in relationships so that the Wanless May 2011 review of the evidence on supporting vision of a ‘fully engaged’ patient, in which patients self-management, this review highlights the need are active partners in their care, becomes the norm for approaches that support patients to have the rather than the exception. confidence, information and support to participate in decisions about their health and healthcare. Adrian Sieff Assistant Director The two sites taking part in our MAGIC (Making The Health Foundation Good Decisions in Collaboration) improvement programme, Newcastle and Cardiff, are developing and testing practical methods of putting shared decision making into practice in a variety of conditions across primary and secondary care, focusing on changing behaviour alongside developing and using decision making tools. This work will offer a much needed contribution to the evidence base on implementation.

ii THE HEALTH FOUNDATION Contents

Executive summary iv

Chapter 1: What is shared decision making? 1

Chapter 2: Does shared decision making work? 9

Chapter 3: Tools to support implementation 14

Chapter 4: Facilitators and barriers 23

Chapter 5: Issues that need more attention 34

References 39

Appendix 1: Review methods 67

HELPING PEOPLE SHARE DECISION MAKING iii Executive summary

Health services in the UK are increasingly focused In this sister publication to our review about on partnership, respect and helping people take self-management support, Helping people help control and responsibility for their health. This themselves, we examine research about the impacts rapid review describes how shared decision making of shared decision making and the factors that may can improve people’s engagement in healthcare and facilitate it or act as barriers. help build patient-centred services. Eighteen bibliographic databases were searched for material available as of mid-November 2011 and What is shared 465 studies were included. decision making? This review focuses specifically on shared decision Does sharing decisions work? making whereby patients and professionals work Research from the UK and other countries suggests in partnership to make decisions about care that strategies to enhance shared decision making when there is more than one good way forward. can improve: Research suggests that this requires patients and professionals to be informed, motivated and – people’s knowledge about their condition and engaged. treatment options Shared decision making is both a philosophy – people’s involvement in their care and a process. It requires a partnership between – people’s satisfaction with care patients and professionals, working together to – people’s self-confidence in their own knowledge select tests, treatments and support packages based and self-care skills on patient preferences, clinician experience and research evidence. This often necessitates a shift in – professionals’ communication with patients. the perceived roles of patients and professionals, the provision of evidence-based information There is some evidence that helping people to share about options, outcomes and uncertainties, and in decision making can have benefits for those support and feedback to ensure that patients and using services and their families. There is also professionals are actively engaged. emerging evidence, from mainly observational and small scale studies, that supporting people to share Surveys and observations have found that shared in decision making can improve their satisfaction decision making is often talked or written about with care and the extent to which they concord but is less common in day-to-day clinical practice. with treatment. Some believe that this may in turn While clinicians may believe that they implement have follow-on impacts for symptoms and clinical shared decision making, the evidence does not outcomes, though research about these impacts always support this. is sparse. iv THE HEALTH FOUNDATION Although some studies suggest that shared A number of studies have found benefits from decision making reduces the use of health services, decision aids, training clinicians, educating patients evidence is mixed and not yet generalisable. Rather and action plans, but other research about these than significantly reducing healthcare use, the initiatives has not found favourable impacts. The evidence implies that patterns of service use may varying findings may be because interventions be more likely to change as a result of shared to help people share in decision making differ decision making. considerably in their aims, approach, content, delivery, duration and target group. However, the lack of evidence related to clinical outcomes and resource use does not signal a lack of Research suggests that information provision effect. It merely means that as yet little high-quality and patient-held records alone are unlikely to be longitudinal research is available. sufficient to motivate ongoing shared decision making. Instead, more active support from An implication from the literature is that helping professionals is needed. Evidence implies that people become active participants in decisions about active support for both patients and professionals is their care has the potential to alleviate pressure on needed to enable true partnerships. For this reason, health and social services, but implementing one- decision aids and access to records alone are off interventions or small-scale tools is unlikely to unlikely to be as effective as multifaceted strategies. make a significant impact on the overall health of All of these strategies could be seen as pieces of the population or on the sustainability of health a jigsaw, which may work well together to form a and social care systems. Supporting shared decision more complete picture. making is not a panacea for all the financial and capacity issues in the health system. Despite this, Studies have found that key facilitators to support shared decision making may have most impact when shared decision making include strong leadership, implemented as part of wider initiatives to improve changing patient and professional roles, motivated care through educating practitioners, supporting patients and professionals and appropriate self-management, applying best evidence, and infrastructure. This implies that a fundamental using technology and organisational partnerships shift is needed in the way that both patients and effectively. professionals view their roles and, therefore, the culture and infrastructure of health services will What do we need to do to be as important as the motivation and attitudes of patients and professionals. support shared decisions? A wide range of initiatives have been tested to implement shared decision making at scale. Initiatives can be categorised along a continuum, with passive information provision at one end and initiatives that actively seek to support patients at the other (see Figure 1). Strategies that have been tested include: – skills training for professionals – decision aids for patients – strategies to activate patients Prompts for professionals for Prompts information electronic and Printed records Patient-held patients for aids Decision engage to professionals Training engage to patients Mobilising goal setting and plans Action – measuring the extent of shared decision making – providing feedback and prompts for clinicians. Passive strategies More active strategies

Figure 1: Continuum of strategies to support shared decision making

HELPING PEOPLE SHARE DECISION MAKING v Studies have concluded that barriers to shared Practical strategies to support shared decision decision making at scale include a paternalistic making in routine practice are needed, including healthcare culture, attitudes of patients and easy-to-use decision support tools. professionals, a perceived lack of time in consultations and failure to address the systems Better measures and metrics would also be useful to issues that constrain clinicians from shared provide clinical and managerial healthcare leaders decision making. and individual clinicians with information about how well shared decision making is being achieved within their organisations and services. What else do we Another core component is supporting clinicians need to know? to help people share in decisions. This includes A great deal has been written about shared developing the competencies and skills that decision making, yet there is still much to learn clinicians need to help patients and changing the about how to make it happen consistently and way that patients and practitioners see their roles to effectively within real life frontline healthcare create more of a partnership approach. It may also settings. Numerous studies are currently underway be important to consider how to minimise feelings including tests of decision support tools, of risk and fears of litigation among professionals, evaluations of training for professionals, studies especially if patients ultimately make decisions that of how policy, guidance and frameworks may be clinicians might not initially concord with. important and examinations of how shared decision Research suggests that shared decision making making works in practice. However, ongoing can impact on how people think, feel and act. The studies are generally not focusing on the impact challenge is to explore the best ways to support of shared decisions on patients’ physical wellbeing shared decision making and to help patients, and on resource use within health and social care. clinicians and healthcare managers make this a Impacts are assumed rather than being tested. reality. A number of innovative strategies are being Major gaps in knowledge and issues in need of tested to support behaviour change in the UK. further attention include understanding how Rigorous evaluation of these programmes and wide to develop new relationships and partnerships dissemination of learning will enhance knowledge between patients and professionals, learning how in this area considerably. to engage clinicians and transmit the attitudes and skills they need to help patients share decisions, and the best tools and strategies to embed shared decision making in routine practice. As there is no agreed definition of shared decision making it remains challenging to extrapolate generalisable lessons. However, the existing evidence base does allow us to draw various conclusions about next steps in moving forward with the concept and practice of shared decision making. For instance, it may be important for patients, professionals and policy makers to have a joint understanding of shared decision making, including whether this involves real power for patients or whether it is merely about gaining approval from patients for suggestions made by clinicians.

vi Chapter 1 What is shared decision making?

1.1 Introduction The review does not aim to be exhaustive but instead provides a rapid and easy-to-use Engaging people in their health and care is a key compilation of evidence. In total, 465 studies component of developing a healthcare system of the were identified from 18 bibliographic databases highest possible quality; one that is safe, effective, in mid-November 2011. This field is developing 1 person centred, timely, efficient and equitable. rapidly and a great deal of new research is Health services are facing significant challenges.2 published regularly. Appendix 1 describes the The population is growing in size and age, medical methodology and how best to interpret the advances mean that people are living longer and evidence presented in this review. there are often many treatment options to choose This chapter defines shared decision making, 3 from. Over the past decade there has been an explores how it is measured and considers the increasing focus in the UK and around the world extent to which decisions are currently shared on supporting people to be involved in decisions within healthcare. The subsequent chapters 4–7 about their care. There is a move away from a examine the impacts of shared decision making paternalistic model where clinicians ‘do things to’ on patient experience, clinical outcomes and and make decisions for patients towards helping service use and consider interventions that have people to take more control of their health and been used to help people share in decision making. 8 care. Politically this is currently expressed as ‘no This allows us to draw conclusions about facilitators 9–10 decision about me without me’. and barriers to shared decision making and areas in Many strategies have been tested to help people need of further exploration. share in decisions about their care with varying success, including providing accessible information, 1.2 What is shared decision support aids, information prescriptions and communication skills training for patients and decision making? professionals.11–12 The term shared decision making has been used to describe many aspects of patient involvement in This review compiles evidence about helping patients their health and care, including access to personal and professionals share in decisions and the impact health records, personal health budgets, care this may have on domains of quality such as people’s planning and decision aids.13 This review focuses involvement, satisfaction, clinical outcomes and specifically on shared decision making whereby health service use. It also examines research about patients and professionals work in partnership to the most effective strategies to support shared make decisions about treatment and care when decision making. It is a sister publication to our there is more than one good way forward. This review Helping people help themselves which examined requires patients and professionals to be informed, the evidence about supporting self-management. motivated and engaged.14

HELPING PEOPLE SHARE DECISION MAKING 1 Shared decision making is a process One of the most common reasons for people’s in which clinicians and patients work dissatisfaction with health services is not being properly informed about their illness and the together to select tests, treatments, 24–25 management or support packages, options for treatment. Many patients may want more information and a greater say in their based on clinical evidence and the care.26–29 Recognising this, shared decision making patient’s informed preferences. It focuses on supporting patients to be involved as involves the provision of evidence-based active partners with professionals in clarifying information about options, outcomes acceptable options and choosing a preferred course and uncertainties, together with decision of care.30 support counselling and a system for Shared decision making is one component of recording and implementing patients’ broader initiatives for patient-centred care so there 15 informed preferences. are some overlaps in the philosophies, ideals and Supporting people to be active participants in their tools used. Similar to supporting self-management, care may have important implications for patient we suggest that shared decision making can be seen satisfaction, the extent to which people concord as having two broad components: the philosophy of with treatment, relationships between patients and partnership and the tools used to support this. 16 professionals and long-term health outcomes. The process of shared decision making may Such patient activation is increasingly important include:31 given financial challenges in healthcare and the imperative to make best use of limited staffing – identifying and clarifying the issue and service capacity. Fully involving patients in – identifying potential solutions their care and in decisions about their care is one component of this.17 – discussing options and uncertainties The ermt ‘shared decision making’ first gained – providing information about the potential popularity in the late 1990s in the USA.18 Some benefits, harms and uncertainties of each option suggest that shared decision making requires that: – checking that patients and professionals have a joint understanding at least two participants, the clinician and patient be involved; that both parties share – gaining feedback and reactions information; that both parties take steps – agreeing a course of action to build a consensus about the preferred – implementing the chosen treatment treatment; and that an agreement is reached on the treatment to implement.19 – arranging follow-up – evaluating outcomes and assessing next steps. This assumes that patients and professionals must ultimately agree on the decisions being made, but However, whatever process is followed, a defining others have argued that agreeing to disagree about characteristic of shared decision making involves a course of action is also acceptable within shared fostering a real partnership, whereby the health decision making.20 professional is seen as an expert on the effectiveness Shared decision making is appropriate in any and potential benefits and harms of treatment situation when there is more than one reasonable options and the patient is viewed as an expert course of action and where no specific option is on themselves, their circumstances, attitudes to best for everyone.21 This situation is common in illness and risk, values, preferences and the extent healthcare.22 The patient’s attitudes towards benefits to which treatment options might fit within their and risks are an important consideration in such lifestyle.32 Both parties need to be willing and able decisions.23 to share information and accept responsibility for joint decision making.33

2 Although the potential benefits of shared decision Similarly, interviews with parents of children with making have been espoused in policy and research attention deficit hyperactivity disorder (ADHD) throughout the Western world, there is no and doctors in the USA found that parents universally accepted definition of this concept.34–35 described shared decision making as a partnership A systematic review of 76 studies found that several between equals, with doctors providing medical definitions of shared decision making have been expertise and the family contributing in-depth proposed but that they are not used consistently knowledge about the child. In contrast, doctors in research.36 The reviewers found that terms such understood shared decision making as a means as ‘informed decision making’ are also sometimes to encourage families to accept the clinicians’ used as if they are synonymous with shared decision preferred treatment.48 making. Only about one-third of the studies in the review cited standard definitions. More than a The studies included in this review also use a quarter of the studies did not provide or cite any variety of definitions which means that it is difficult definition of shared decision making or used the and perhaps unwise to make comparisons term in a different way from usual definitions.37 between studies. Another systematic review of 418 articles about 1.3 How is shared decision shared decision making found that around two-fifths included a conceptual definition. The 161 different making measured? definitions used 31 separate concepts to define The main ways that researchers have measured shared decision making, most commonly ‘patient whether decisions are being shared include:49 preferences’ and ‘options’. Few articles explicitly recognised and integrated previous work. There was – asking patients whether they have been involved no standard definition of shared decision making.38 in decisions Another systematic review of literature published – asking clinicians whether they have involved between 2000 and 2009 identified 147 publications patients in decisions about shared decision making by German – examining patient records for evidence of shared researchers alone. The reviewers found that the decision making definitions used varied widely, as did the tools used to measure shared decision making. There was little – asking clinicians for feedback about what they research about the theoretical foundations and would do in hypothetical situations 39 ethical implications of shared decision making. – observing encounters between clinicians or Thus, there appears to be no universally trainees and simulated patients used definition of shared decision making. – observing encounters between patients and Furthermore, research suggests that there may be clinicians or audio or video taping consultations different conceptualisations among patients and and watching them later. professionals about what shared decision making 40–46 means and the extent to which it is occurring. There are issues with all of these methods. For For example, interviews with patients, public instance, case note review cannot accurately representatives, health professionals and health ascertain whether decisions were truly shared, service managers in Norway explored differences observation may be intrusive and labour intensive in the definition of patient involvement and shared and patient and professional reports of the quality decision making. All groups believed that patient and quantity of shared decision making have been found to differ from those of independent involvement was founded on mutual respect and 50 undertaken through dialogue, but patients and observers. professionals assigned varying levels of importance To increase the reliability of measures, structured to different components. Respect was imperative tools have been developed. For example, often when for patients, but more implicit for professionals. encounters are observed, scales and proformas are Both patients and professionals worried that the used to count the number of times certain actions 47 other party wanted to make sole decisions. occur or the level of involvement evident.51

HELPING PEOPLE SHARE DECISION MAKING 3 An assessment tool known as the Observing Patient Thus, we can conclude that a wide variety of Involvement in Decision Making (OPTION) scale methods and tools have been used to measure has been developed to measure the extent to which shared decision making but that there are pros professionals involve patients in decision making. and cons with each method and each method may OPTION measures 12 behaviours on a scale of measure slightly different things. 0% to 100%, whereby high scores signal greater shared decision making.52–54 A dyadic version of the 1.4 Is shared decision instrument has been developed so that the tool can be completed by both clinicians and patients after a making occurring? 55–56 consultation. The tool has been translated into Global studies suggest that some patients want many languages, including Dutch, Chinese, French, to be more involved in decisions about their 57–58 German, Spanish and Italian. care.80–83 However, shared decision making may The Shared Decision Making Questionnaire has not be taking place as often as possible in clinical 84–85 also been found to be a useful tool and has been practice. A Cochrane review concluded that: 59–60 tested mainly in Europe. Shared decision making is a process by Other tools to measure communication preferences which a healthcare choice is made jointly and the extent of shared decision making have by the practitioner and the patient and been validated in a number of countries.61–63 This is said to be the crux of patient centred includes scales and checklists developed for people care. Policy makers perceive shared with certain conditions such as cancer64–68 and 69 decision making as desirable because specific demographic traits as well as more generic of its potential to a) reduce overuse of tools designed to measure shared decision making in any healthcare context.70–75 options not clearly associated with benefits for all (e.g. prostate cancer screening); New instruments to measure the process, outcomes b) enhance the use of options clearly and contextual factors in shared decision making are associated with benefits for the vast being developed. A systematic review published in majority (e.g. cardiovascular risk factor 2011 found eight scales that have undergone detailed psychometric testing, 11 new psychometrically management); c) reduce unwarranted tested instruments and nine unpublished tools. The healthcare practice variations; d) foster reported reliability of most scales was good, but the sustainability of the healthcare system; they differed in the extent to which they had been and e) promote the right of patients validated. Most of the newer tools measure shared to be involved in decisions concerning decision making processes from a dyadic approach, their health. Despite this potential, assessing both the patient’s and the clinician’s shared decision making has not yet been perspective. An increasing number of tools are being widely adopted in clinical practice.86 tested in languages other than English.76 This section describes how patients, professionals Other reviews have identified between 11 and and policy makers may express support for shared 18 tools and scales designed to measure shared decision making,87–89 but such approaches may decision making. Most focus on patients’ not yet be routinely implemented in the UK and preferences for information and participation and elsewhere.90–92 their views about decisional conflict, self-efficacy 77–78 and the decision-making process. The policy context: UK and beyond Assessment instruments have also been developed In England, both the current and the previous to measure regrets about healthcare decision government emphasised the importance of involving making. However, a systematic review of 32 patients in decisions about their care as a way of articles about the development, validation and supporting self-management and repositioning the implementation of measures of decision regret focus and responsibility for wellbeing away from found that tools are somewhat simplistic and fail to acute services and towards individual patients and capture decision-making concepts robustly.79

4 families.93–94 Documents such as Our health, our reluctance to embrace the concept fully.110 There are care, our say, Equity and excellence and the 2011 localised research projects about patient decision Health and Social Care Bill all contain references aids, but little at national level.111–112 to supporting patient involvement and control over decision making and care.95–97 Similar policy In Spain, the past two decades have seen a growing directives are available in Scotland and Wales.98–99 recognition of the importance of considering patients’ values and preferences in healthcare The NHS Constitution emphasises patients’ right to 113 be involved in decisions and this is reinforced in the decisions. Decision aids are being funded standards set by professional regulators.100 nationally by health technology assessment agencies, but Spain’s national health service has Governments in England, Scotland and Wales have yet to routinely incorporate reforms in law that invested heavily in patient information initiatives recognise shared decision making and decision and a limited number of decision aids are freely aids as a key component of healthcare services available on public websites.101 and professional curricula.114 Most patients and professionals are not familiar with a patient’s right Studies about shared decision making in the UK to be kept informed and participate in their own are largely being undertaken by a select number of healthcare decisions.115 higher educational institutes and specialist research centres in partnership with NHS organisations.102 Over the past five years the Dutch healthcare system has been reformed to be more patient Other countries throughout Europe are also oriented and driven by patient demand.116 A exploring the potential of shared decision making. platform for shared decision making was launched In Switzerland, national policies are focusing in 2011.117 A government healthcare internet portal on strengthening patient rights and patient for patients includes 16 patient decision aids, but involvement in healthcare decisions. There is no healthcare professionals receive limited training in national programme promoting shared decision shared decision making. making but a small number of decision support tools have been developed and implemented Research projects about shared decision making are widely.103 Swiss doctors generally acknowledge underway throughout the Netherlands, but there that shared decision making is important, but is limited national coordination of the research patient–doctor relationships still tend to be agenda.118–119 hierarchical. Training initiatives for medical students have been established to address this.104 In Italy, the national health plan and many regional and local health authorities have recognised the Germany has introduced legislation to standardise importance of patient participation in healthcare the rights and responsibilities of patients and decisions at the macro, meso and micro level professionals. This includes the right to informed of decision making. However, implementation decisions, comprehensive information for remains at an early stage in Italy.120 Demonstration patients and decisions based on partnerships projects have found positive outcomes and between patients and professionals.105 Shared suggested that particular attention should be decision making training programmes have been dedicated to the most disadvantaged groups of implemented for professionals and a number of the population. There is also a focus on involving decision support tools have been tested, largely patient organisations and adopting approaches that by health insurance providers.106 The German take context into account.121 government and other public institutions are funding research into shared decision making and In the USA, shared decision making has become decision support tools.107–108 an important part of health policy and is viewed as a way of improving effectiveness and reducing France also has legislation promoting greater costs.122 Recent federal healthcare reform legislation patient information and participation in the includes several provisions related to shared decision-making process, but implementation has decision making and patient decision support. been slow.109 There is some evidence that patients Several states have passed or are considering and professionals have different definitions of legislation that incorporates shared decision shared decision making and that there may be some making as an essential element of healthcare.123

HELPING PEOPLE SHARE DECISION MAKING 5 Research about shared decision making in the In Brazil, shared decision making is not routinely USA is funded by a range of public and private implemented in clinical practice but the first organisations and non-profit, for profit, academic steps have been taken towards research and tool and government organisations are developing development. This has been associated with decision support tools for people with various movements against a dictatorship era and the conditions. Some tools are publicly available and introduction of a medical ethical code.133 others are provided by patients’ health insurance companies and healthcare professionals.124 In Israel, laws have been set up focused on Numerous studies and demonstration projects are informed consent and patients’ right to information underway to evaluate how to incorporate shared but there are few formal shared decision making initiatives or programmes to promote this concept decision making and decision aids into routine 134 clinical care.125 to professionals or the public. Government support of research related to shared decision In Canada, approaches to shared decision making making is minimal and there is no national vary widely.126 Canada has 14 health insurance programme to develop decision aids. However, plans at various administrative levels. Shared there is an increasing awareness of shared decision decision making initiatives are taking place to a making due to greater patient litigation, the varying extent within these different pockets of incorporation of communication skills training into the country. In the most advanced province, the medical curricula and awareness raising campaigns local government is introducing patient decision by the largest national health insurance plan.135 aids into certain surgical specialties. There is a public inventory of decision aids ranked according Many other countries are also prioritising shared to international standards and free guides and decision making in policy and research, and this toolkits have been developed for patients and section has provided only a small snapshot. professionals.127 Canada’s main health research funding agency is sponsoring several projects.128 From policy to practice Although shared decision making is often discussed Developments are also underway further in policy and planning documents,136 the extent afield. In Australia there is support for shared to which it is occurring in practice is less certain. decision making in recent guidelines and policy Some research suggests that patients are generally documents and the concept is strongly endorsed happy with communication and decision making by consumer organisations. However, there is no in healthcare,137 but far more research suggests that clear overarching policy framework and little by currently there is minimal sharing of decisions in way of implementation. Some health research and primary care and hospital consultations,138–139 even consumer organisation websites include decision though doctors and nurses often say that shared support tools but their use is not widespread.129–130 decision making is important and believe that they In Chile, health reform and policy documents are actively involving patients.140–143 This is true in have strengthened interest in shared decision many countries throughout the world. making. Research has been undertaken largely For instance, observation of 212 general practice by one academic institution. This research consultations in England and follow-up interviews has highlighted that people in Chile have a with patients found that decisions were generally desire to participate in health decisions and doctor led, even those that did not involve medical that professionals can be trained to enhance treatments. Some doctors were significantly their skills in this area.131 Little has been done better than others at meeting different patients’ nationally to roll out these findings and decision preferences about their decision-making role.144 support tools and coaching interventions are limited largely to people with diabetes.132 Elsewhere in England, interviews examined how practice nurses approached decisions about asthma inhaler choice and long-term inhaler use. Despite holding positive views about shared decision making, nurses reported limited shared decision making in practice. Patients were only offered an

6 opportunity to share in decisions about which Shared decision making may be seen as acceptable inhaler to use, based on the nurse’s preselected in some clinical contexts but not in others. For recommendations. Nurses thought that giving example, in Australia around six out of 10 health patients a ‘choice’ of devices would improve professionals and patient advocates supported the adherence. The researchers concluded that there general concept of shared decision making in breast is a discrepancy between nurses’ understanding cancer but less than one-third of surgeons, doctors of shared decision making and the wider policy and radiation oncologists supported involving framework. Shared decision making was used as a women in multidisciplinary treatment planning tool to support the nurses’ agenda, rather than as a meetings. Nurses and patient advocates were more partnership between patients and nurses.145 likely to be positive.151 Researchers in Germany observed the extent A study with simulated patients in the USA found to which general practitioners (GPs) involved that medical students tended to encourage shared overweight people in decisions about their care decision making in most of their consultations using recorded consultations. There was minimal to some extent, particularly regarding medical implementation of shared decision making.146 interventions. In fact, students took around 90% of opportunities available to encourage shared In Sweden, a survey of 156 elderly people in decisions, though this was in an artificial observed hospital found that one-quarter were not asked for environment. Good communication skills alone their opinion or encouraged to share in decision were not enough to ensure that trainees and making, one-quarter had less participation than clinicians supported shared decision making.152 they would have preferred, one-third had their exact preferred level of participation, and 15% had A survey of cancer doctors in Canada found that more responsibility than they would have preferred. only 58% had heard the term shared decision Most people wanted to be given more information making and 29% said that they were aware of its and involvement without having to ask.147 meaning.153 Investigators in Norway found that elderly people Some studies have quantified the extent of shared tended to trust health professionals, but some decision making more precisely.154,155 For instance, felt powerless and were afraid of what might researchers in Canada used the OPTION scale to happen if they refused to follow instructions from rate 12 shared decision making behaviours among professionals. They thought that professionals 152 GPs and family medicine residents and their ‘owned’ knowledge and decided what patients patients, where higher scores were associated with needed to know. But patients wanted dialogue better shared decision making. The overall average about the future and struggled to be involved in score was just 24%, with average scores ranging decision making.148 from 4% to 37% for each of the 12 behaviours. This suggests that shared decision making was not well Interviews with people recently diagnosed with integrated into routine practice.156 lung cancer in Belgium found that patients who preferred the doctor to make decisions or those In the Netherlands, videos of consultations between who preferred to make the decision themselves cancer doctors and their patients found that often achieved this, while those who wanted to clinicians infrequently offered patients a choice or share decisions and have some involvement often explored the pros and cons of different options. did not feel that this occurred. The majority of Patients were offered a choice or actively asked to people did not feel well informed about decisions, participate in decisions in about 40% of cases.157 let alone involved in making them.149 Researchers in the USA examined 44 primary care Researchers in Australia found that GPs tended to visits among people with long-term conditions. adopt the role of persuader rather than informer They found that shared decision activities occurred when speaking to parents about vaccinations for in 61% of the visits. Decision aids were not used in children. They did not implement shared decision any visit even though 34% of visits included topics making in practice.150 where peer-validated decision aids were freely available.158

HELPING PEOPLE SHARE DECISION MAKING 7 Other observations in US primary care found that 1.5 Summary 50% of decisions were shared to some extent.159 Another US study of lifestyle modifications in Literature suggests that shared decision making people with psychiatric disabilities found that involves proactive engagement of patients and decisions were shared between patients and professionals working in partnership to share practitioners in 44% of routine consultations where information, consider the pros and cons of different 164 lifestyle behaviours were discussed. In this study options and make a joint decision. Shared shared decision making was defined as sharing decision making is feasible wherever there is no one information and options about behaviour by either best evidence-based course of action. Patients are or both practitioner and client and affirmation of a viewed as experts about their own health, values decision by both. This is a rather passive definition and lifestyle and professionals are viewed as experts of shared decision making, but shows that some about treatment options and potential risks and 165 involvement in decisions is feasible even within benefits. 160 short routine consultations. While a substantial amount of policy and research Some have postulated that there is a spectrum focuses on shared decision making, there is not 166 of pressure applied in ‘shared decisions’. In other one universally accepted definition. Patients words, not only is the frequency of shared decision and professionals may also define the term quite making limited but so too is the amount of differently and believe that the concept has different 167 ‘sharing’ and partnership involved. For instance, objectives. audio recordings of 92 psychiatry consultations In developed countries the concept of shared in the UK found ‘pressured shared decisions’ at decision making is promoted in high- level policy one end of the spectrum, which are characterised and seen as a crucial component of patient-centred by an escalating cycle of pressure and resistance care.168–169 Health professionals generally say that to conform to a decision preferred by either the they support shared decision making, but surveys patient or the clinician. In the middle were directed and observational studies in numerous contexts decisions, where the patient cooperates with being suggest that there is a mismatch between policy diplomatically steered by the professional. At the directives, professionals’ reports and the extent of other extreme were open decisions where the shared decision making in practice.170–171 patient was encouraged to decide, with little or no pressure. Few decisions were truly shared by both There is significant scope to increase the proportion patients and clinicians.161 of decisions that are shared between patients and professionals.172–173 The next chapter explores why it Many other studies have explored the proportion may be worthwhile to do so. of decisions that are shared between patients and professionals. The aim of this review is not to derive the proportion of decisions that are shared, but rather to emphasise that research suggests that the proportion of decisions that are shared is relatively low. The mismatch between policy rhetoric and practice may be due to differences in how shared decision making is defined. For instance, professionals may define sharing decisions as providing information or giving patients an opportunity to comment on the decisions that the clinician is making.162 The low uptake of shared decision making may also be due to professionals not having the skills or the time to fully involve patients as equal partners in care.163 Other facilitators and barriers are explored overleaf.

8 Chapter 2 Does shared decision making work?

This chapter describes evidence about the impact Another literature review found that shared of shared decision making on the six US Institute decision making had a positive effect on patient of Medicine domains of quality: patient-centred satisfaction and had more impact than gender, experience, effectiveness, efficiency, timeliness, education or the number of healthcare visits.185 equity and safety.174 In some instances, few studies have examined the impacts in these areas, but each Similarly, a national study of more than 1,000 aspect of quality is examined for completeness. people with major depression in the USA found that shared decision making improved It is important when interpreting these findings to patient satisfaction.186 appreciate that the effects of different interventions and types of shared decision making may vary. Research about the impact of shared decision When reading this chapter it is important to bear making on patient experience tends to focus on the in mind that interventions to encourage shared value of specific tools or techniques, such as aids to decision making vary considerably in their aims, help patients and professionals communicate more effectively or structured checklists to support the approach, content, delivery, duration and target 187 group as well as in terms of the health economies in decision-making process. which they are implemented.175 It would therefore Descriptions about various tools are provided in be misleading to consider ‘shared decision making the next chapter but, in general, research suggests initiatives’ as an integrated whole. that tools to encourage shared decision making can help patients feel more engaged in decisions and 2.1 Impact on patient- this increases satisfaction with care.188–191 centred experience Strategies to involve partners and family members in decision making have also been found to Patient satisfaction improve satisfaction with care192 as have initiatives to train professionals.193 People who participate in decisions and who are given an explanation of their health problems But not all research is positive.194 A large randomised are more likely to be satisfied with their care.176 trial in Germany found that a structured A number of studies suggest that shared decision patient decision support tool for cardiovascular making improves patient satisfaction with health prevention in primary care did not significantly services and with their involvement in care.177–183 improve satisfaction among patients or doctors. The investigators concluded that better ways to For instance, a systematic review of 108 studies measure the impact of shared decision making found that shared decision making was associated are needed, rather than focusing predominantly with improved patient satisfaction.184 on patient satisfaction and experience.195 Another randomised trial in Germany found that centres were randomly assigned to encourage using a decision aid for women with suspected shared decision making or to provide care as usual. breast cancer improved knowledge but did not Shared decision making was associated with an increase patient satisfaction, decrease conflicts increase in patient autonomy and confidence in when making decisions, or influence treatment independent behaviour.215 uptake.196 A number of other studies have suggested A randomised trial in Norway tested a improvements in decision-making confidence, computerised decision support system for people particularly from decision aids.216 However, with cancer. Patients scheduled for an outpatient the best strategies to encourage self-efficacy visit used the system on a tablet computer to remain uncertain.217 report their symptoms and preferences prior to their consultation. This was then used to generate 2.2 Impact on effectiveness a report for use in subsequent consultations. There were no differences in patient satisfaction While research generally supports the impact of compared to usual care.197 shared decision making on patient satisfaction and experience,218 findings are not conclusive about the Communicating about the risks as well as the impact on clinical outcomes. benefits of different options is an important component of shared decision making. In Wales, For instance, a systematic review of 11 randomised researchers explored how doctors communicate trials comparing shared decision making uncertainty about treatments and the impact of interventions with usual care found mixed results this on women’s decisions and satisfaction with regarding satisfaction, treatment adherence and decisions about breast cancer. When doctors health status. Five of the studies found that shared talked about uncertainty this reduced women’s decision making had no impact, one found no involvement in, and satisfaction with, the decisions short-term effects but positive longer-term impacts, made, but the researchers suggested that in the and five trials reported some positive effect on long term involving patients in decisions might outcome measures, including in mental health.219 help them tolerate uncertainty. In the short term, More positively, feedback from professionals however, this component of shared decision suggests that patients may be more likely to adhere making may reduce patient satisfaction.198 to treatment if they are involved in decisions about Drawing on the available evidence, we can conclude their care. For instance, dieticians in Canada that while shared decision making has often been reported that people were much more likely to found to improve patient satisfaction with care, this follow through with treatments and actions if is not the case in all research. decisions were mutually agreed.220 A randomised trial in the USA also found that Self-confidence shared decisions between people with asthma How people think and feel about their health and clinicians resulted in greater adherence to can have a significant impact on their behaviours treatment and better clinical outcomes such as and outcomes.199–204 quality of life, symptom control and lung function over a two-year period.221 Studies suggest that irrespective of preferences for involvement, patients are more confident in decisions There may also be some more direct impacts on in which they perceived they were involved.205 health outcomes. A trial in the Netherlands found that structured shared decision-making sessions There is evidence that improved self-efficacy supported drug users to reduce problematic or self-confidence about health behaviours is behaviours. This was associated with improved 206–214 correlated with improved clinical outcomes. clinical outcomes.222 Correspondingly, some studies have examined the impact of shared decision making on self-efficacy as a proxy for other outcomes. For instance, in the Netherlands, clinicians at three addiction treatment

10 Another example is a survey of 212 people with Another US trial of a decision aid for people diabetes in the USA which found that blood with diabetes found improved knowledge and pressure control was influenced by a shared decision involvement in decision making about diabetes making style and proactive communication with medications. However, at six-month follow- doctors about self-monitoring and blood pressure up there was no difference from usual care in results.223 medication use or blood glucose control.234 A randomised trial in the USA found that patient A randomised trial of a DVD decision aid for involvement in decisions improved the quality of people with heart disease in Canada found no care and reduced the symptoms of depression over differences in satisfaction or health outcomes an 18-month period.224 after six months compared to those receiving usual care.235 Research has also explored the benefits of specific tools and strategies to improve shared decision Another trial in Canada examined the impact of making, rather than just the decision making style a decision aid for people with atrial fibrillation. in general. For instance, a goal-setting intervention There was a short-term improvement in the to improve shared decision making among people appropriateness of medication use among people with diabetes in the USA was associated with using the decision aid, but this did not last.236 trends towards improved blood glucose control and weight.225 A randomised trial of training GPs in shared decision making in Wales found no impact on A trial in Germany compared usual care versus patient outcomes at one-month follow-up, but this a 20-minute decision aid and a brochure prior to may be too short a follow-up period.237 a planning consultation for women with newly diagnosed breast cancer. One year on, those who To summarise, some research has found improved received shared decision support had better long- adherence to treatment recommendations when term body image outcomes and coping strategies.226 patients are encouraged to play an active role in decision making, though these studies tend to focus But other research has been less favourable. A on clinician-reported behaviours. There is less Cochrane review of shared decision making in conclusive evidence about the impacts of shared mental health identified two relevant studies. One decision making on clinical outcomes. study found that shared decision making improved patient satisfaction, the other did not. There It may be difficult to measure impacts on clinical was no evidence of improvements in adherence outcomes, especially because shared decision to treatment, clinical outcomes or hospital making may have long-term downstream impacts readmission rates.227 rather than effects on symptoms that can be easily and quickly measured.238 Few studies include long In Germany, a randomised trial found that people enough follow-up periods to allow conclusions to with high blood pressure whose clinicians were be drawn about longer-term clinical outcomes.239–243 trained in shared decision making did not have This is reinforced by a study in the Netherlands of better clinical outcomes than those who received two assessment sessions followed by individualised usual care.228–229 Other trials of training health treatment information for women at high risk professionals in Germany found similar results for of developing breast cancer. A randomised trial people with a variety of different conditions.230–232 found that this shared decision making approach had no effect in the short term. In the longer term, A randomised trial in the USA assessed the impact however, the shared decision making sessions of a decision aid on perceived risk of heart attacks were associated with better general health and less and medication adherence among people with depression.244 diabetes. The decision aid improved knowledge but there was no difference in medication adherence or clinical outcomes at three or six months.233

HELPING PEOPLE SHARE DECISION MAKING 11 2.3 Impact on resource use found that shared decisions between adults with asthma and clinicians resulted in reduced There is mixed evidence about the impact of shared health service use over a one-year period.252 decision making or specific decision making tools and techniques on healthcare resource use and cost In the Netherlands, a blood loss chart was used to effectiveness. help women with problematic blood loss from the uterus decide on appropriate treatments. Using the Few studies report on the cost of interventions to chart resulted in a 50% reduction in retreatments support shared decision making. An exception within one year. Although an extra clinic visit was is a study of the cost of training GPs in shared needed to use the chart for shared decision making, decision making in Wales. Training cost £1,218 per the costs were offset by lower overall treatment practitioner which equated to an increase of £2.89 costs and more favourable cost per quality adjusted in the cost of each consultation. Training in shared life year gained.253 decision making influenced some prescribing, but did not affect the probability of investigations, Other evidence about the cost effectiveness of referrals or follow-up GP visits. The investigators shared decision making is indirect. For example, a therefore concluded that unless training has randomised trial in Canada found that training GPs a major influence on consultation length, it is in shared decision making reduced the proportion unlikely to have any major impacts on cost.245 of people with respiratory symptoms who decided to use antibiotics immediately after consulting There is mixed evidence about the impact of shared their doctor. This is important because it may 246 decision making on consultation length. Some reduce medication bills and also complications studies suggest that shared decision making is and follow-on care arising from unnecessary use of 247 feasible within the usual timespan of consultations, antibiotics.254–255 Other studies have found similar but others have found that shared decision making reductions in unnecessary medication use.256 takes more time than ‘traditional’ care.248 A randomised trial in the USA examined the impact On one hand, doctors and nurses participating of a decision aid with individualised risk information in a trial of a decision aid for people considering for women with breast cancer. The tool resulted in colorectal cancer screening reported that the tool fewer women with tumours of low severity choosing complemented their usual approach and saved time. adjuvant treatment, thus saving resources.257 The time saved was not quantified or costed.249 However, other research is not as favourable. However, on the other hand, a study in England Most such studies evaluate the effects of examined computer-based decision aids for specific tools to support shared decision reducing the risk of stroke in older people with making rather than the concept and practice atrial fibrillation. Decision aids significantly of shared decision making itself. prolonged GP consultations. The authors concluded that decision aids may not lead to more ‘sharing’ in For example, in Germany people with treatment decision making and that they may take schizophrenia received a decision aid about too long to use in routine primary care.250 medication choices and a planning talk with a doctor. Shared decision making was not associated Another example is a training programme for with improved long-term medication compliance doctors in Germany which was associated with or readmissions to hospital compared to a control improved consultation behaviours. However, group receiving usual care.258 shared decision making was found to be time consuming and needed to be implemented over the A randomised trial in Finland evaluated the effects of course of more than one consultation.251 a decision aid for more than 500 women with heavy menstruation. A booklet explaining the condition A limited number of studies have directly and treatment options was posted to patients before examined the relationship between shared their first hospital outpatient appointment. The decision making and the cost of care or quantity decision aid improved treatment, but there were of service use. For example, a randomised no marked differences from usual care in health trial with more than 600 people in the USA outcomes, satisfaction with treatment, or costs.259

12 2.4 Impact on timeliness 2.7 Summary The review identified no studies that examined Despite a great deal being hypothesised about the extent to which shared decision making the benefits of shared decision making, there is impacts on the timeliness of care provided as a relatively limited robust research available. There primary outcome. is evidence that shared decision making improves satisfaction with care,266 but little research about 2.5 Impact on equity safety, timeliness or equity. There are mixed findings about clinical outcomes and resource use. Few studies have examined the extent to which Some studies have very favourable findings,267–268 shared decision making impacts on equity in but others show no difference from usual care.269–271 healthcare. The mixed nature of the evidence base implies that In the USA, black and Hispanic people have been shared decision making may be most effective when found to be less likely to share decision making than used as part of a broader ethos of care. A review white people260–262 and this may contribute to poorer found that patients who engage in collaborative healthcare and health disparities.263 However, care, share decision making with professionals and good quality studies have not directly investigated self-manage their conditions have improved health whether initiatives to strengthen shared decision outcomes. Shared decision making was just one making also improve equity and access to health component of improving health outcomes and may services and reduce health disparities. not have this impact if used alone.272 2.6 Impact on safety Few studies have examined the extent to which shared decision making impacts on patient safety. Those that do exist tend to focus on the potential for enhancing safety by reducing reliance on unnecessary medications or reducing adverse effects rather than decreasing the rate of healthcare errors.264–265

HELPING PEOPLE SHARE DECISION MAKING 13 Chapter 3 Tools to support implementation

Various tools and techniques have been tested to Reviews and studies suggest that printed encourage shared decision making. This chapter information can improve knowledge,281–283 but may summarises approaches targeting patients, not impact on behaviour when used alone.284–285 professionals and the wider healthcare system. However, findings are mixed. Some trials suggest that posted educational materials are as effective 3.1 Tools targeting patients for improving symptoms and self-efficacy as group 286 A variety of approaches have been researched to education sessions. There is also evidence that help patients share decision making. These can be combining written information with lectures or conceptualised on a continuum with more passive other educational activities can be more effective information sharing approaches at one end and than written information alone for supporting 287 more active planning and support at the other – self-management and shared decision making. see Figure 1. Approaches are summarised in this Some studies suggest that targeting and chapter beginning with more passive strategies. personalising information is more effective than standardised materials.288–291 Most of these studies Printed and electronic information focus on the impacts of written information on Providing information about people’s conditions self-management and self-efficacy. Shared decision and the options for managing them is an important making may be one component of this, but is not aspect of supporting shared decision making.273 usually the sole outcome examined. Information can be provided using leaflets, A novel approach was used at one psychiatric websites, email, text messages, electronic forums, medication clinic in the USA. The waiting area was by telephone and in person individually or converted into a peer run ‘decision support centre’ in groups.274–275 featuring a user-friendly computer programme that A great deal has been written about different ways helped patients with severe mental disorders create to provide healthcare information to support shared a one-page report for use during the consultation. decision making or self-management.276 Much The intervention was well used and well regarded of the literature sees sharing in decisions as one by patients and professionals. It reportedly component of supporting self-management.277–278 improved efficiency during consultations and empowered patients to become more involved in There is some evidence that written motivational making decisions about their care.292 leaflets or letters can help people feel more confident to raise their concerns and discuss their Information prescriptions are gaining popularity. In symptoms,279 but there is sparse evidence that such England, the Department of Health has developed methods improve decisions, self-management an initiative whereby everyone with a long-term behaviours or clinical outcomes.280 condition or social care need is supposed to be offered an ‘information prescription’ to help patient-held records and electronic access may guide people to relevant and reliable sources of have some benefits, but they do not necessarily help information and help them feel more in control of people share in decision making. their care.293 Information prescriptions may contain details about people’s conditions and treatments, Although this approach is gaining popularity, a benefits, support groups and local health, social number of reviews and trials suggest that patient- care and other services. As yet there has been held records and access to electronic records have limited effects on shared decision making and limited evaluation about whether information 308–309 prescriptions can include, or act as, decision aids, self-management behaviours. The evidence is but work in this area is ongoing.294 too mixed to suggest that patient-held records are a useful enabler for shared decision making. Various technologies have also been used to provide information to support shared decision Thus, based on the evidence, we conclude that making including text messages, computer encouraging patients to have control over their programmes and DVDs.295 These technologies tend health records may be useful but not sufficient to to have similar outcomes to written information shift the balance of power within consultations. materials: they may increase knowledge, but their In this view, access to, and control over, care impact on longer-term patient activation and records needs to be seen in the context of a clinical outcomes is uncertain.296 changing relationship between healthcare providers and patients.310–311 The value of patient-held records is therefore not simply about access to information Patient-held and electronic records – it is a component of changing the broader model Another strategy to increase people’s involvement of care.312 in healthcare processes and decision making is providing people with access to, and more control Traditionally, the provision of health information over, their care records. Sometimes people are may focus on a paternalistic model of care whereby given their medical records to keep and bring to the ‘doctor knows best’ and where information is each consultation, which is known as patient-held for clinicians to use in determining what patients 313 records. Another approach is to allow online access. should do. To encourage shared decision making, There is some evidence that this is welcomed by patient records may need to shift from being a patients.297 passive archive for recording information towards being an active tool for supporting both the patient It has been suggested that giving people access to and the clinical team.314 their health records can be a driver to enable people to take more control over their health and manage Decision aids for patients their care more effectively.298 Patient-held records might also be a lever for improving the quality of Decision aids have been developed to encourage care.299–301 patients to be actively involved in decision making. These take a variety of forms including online Some suggest that giving people access to their applications and computer programs, DVDs, records electronically may benefit both patients games, worksheets and leaflets. and GP practices.302 Being able to view their medical records from anywhere at any time may Decision aids based on the philosophy help people feel more in charge of their health and of shared decision making are designed improve relationships between patients and the GP to help patients make informed choices practice.303–306 among diagnostic or treatment options by A randomised trial in the USA provided patient delivering evidence based information on 315 records online to people with heart failure. After options and outcomes. one year, those who had access to their records A great deal of research has been undertaken about online were more likely to adhere to treatment, decision aids of many forms.316–343 but there were no differences in self-efficacy or satisfaction with care.307 This suggests that

HELPING PEOPLE SHARE DECISION MAKING 15 For example, ‘decision boards’ have been designed For instance, a literature review found that to help clinicians present options and include multimedia decision aids or support systems can patients in decision making. They often comprise improve the quality of decision making in terms of clinical information, different treatment options enhancing knowledge, reducing decisional conflict, and description of potential benefits and side and customising education and coaching for people effects. Patients are encouraged to select what with cancer.364 they think are the three worst side effects and are then informed of the probability that these will Another systematic review of 23 randomised trials occur. Tests in Brazil found that tools like these found that people with cancer using decision aids were more likely to participate in decision making can work well to improve patients’ knowledge and 365 participation.344 and achieve higher-quality decisions. A randomised trial in the USA tested a decision Another systematic review of 11 studies found that board to encourage shared decision making in decision aids improved knowledge, involvement in dentistry. The decision board included treatment decisions and satisfaction with the decision-making alternatives, benefits, risks, prognosis and costs process among women with breast cancer. Decision aids were well received by clinicians and patients of procedures such as root canals and tooth 366 extractions. The group using the decision board and were feasible to use in routine practice. had better knowledge but no change in satisfaction In the USA, a computerised decision aid was used or anxiety compared to usual care.345 to help women with breast cancer make decisions Another example is ‘outcome wheels’. These have about reconstructive surgery. Those who used been used immediately following stroke to display the computer learning module reported having a information simply and help patients and their greater role in choosing the type of reconstruction, families share in making informed decisions in a said that more reconstructive options were offered to them and were more satisfied with the amount of time sensitive manner. The tools visually display 367 outcomes and the role of chance in a ‘spin the information they were provided with. wheel’ manner.346 Research suggests that decision aids can be useful when weighing up the benefits and harms of Games and interactive activities have also been 368–372 tested. In the USA, men with prostate cancer were different treatments or screening options, when considering symptom management and invited to play an interactive ‘game’ to assist with 373–374 decision making. Focus groups and a survey found the most appropriate level of care and when managing long-term care in a manner informed by that the game was a useful and appropriate decision 375–376 tool which helped to increase awareness of the pros patient values. and cons of treatment and generated questions for A randomised trial in the USA tested an interactive patients to ask clinicians.347 computer-based decision aid for cancer screening. Although offered in different formats, many In total, 665 people of average risk were allocated decision aids have characteristics in common, to receive the decision aid alone, the decision aid including providing facts about the condition, plus a personalised risk assessment or usual care. options and outcomes; helping patients clarify their The decision aid was used just prior to a scheduled values and what matters to them most; and helping primary care visit. Those receiving the decision people think through the pros and cons of different aid alone or with a risk assessment had better options so that they can make informed choices.348 knowledge and were more likely to make a decision about screening tests. However, professionals only Systematic reviews and studies suggest that complied with patient preferences in six out of 10 evidence-based decision aids can improve patients’ cases. The researchers concluded that decision aids knowledge, ensure a better understanding of can help patients identify their preferences but their treatment options and help people more accurately overall effectiveness depends on the extent to which perceive the benefits and risks of different professionals are willing to discuss and take on options.349–363 board patients’ views.377

16 The benefits of decision aids may also depend in communication skills and clinical evidence for on how they are disseminated. A comparison of professionals, a patient group visit and a scheduled distributing video decision aids for prostate cancer discussion between patients and professionals.386 using four methods found that automatically mailing decision aids to all appropriate patients Decision aids may work better for some groups improved uptake of screening but also led to than others. For instance, a US study examined the ineligible patients receiving decision aids. reach and impact of five decision aids distributed Non-automatic distribution strategies led to low to 549 women with breast cancer. Decision aids rates of receipt. The researchers concluded that were associated with increased knowledge and automatically distributing decision aids is more decreased conflict or uncertainty about decisions. effective than relying on clinicians to give material Improvements were most likely among those who to people.378 knew less at the outset, those who were uncertain about their choices and women from minority Most studies of decision aids focus on people with ethnic groups.387 a relatively narrow range of conditions.379 Research is not universally positive and there is still a lot to Similarly, a randomised trial in the USA found that learn about how to implement decision aids.380 For a CD-ROM decision aid for women at high risk of instance, a trial of a decision aid for people with breast cancer was most effective among those who multiple sclerosis found improved knowledge but were initially undecided about how to manage their no impact on the roles adopted in consultations breast cancer risk. Within this group, the decision or the choices made. The researchers concluded aid led to an increased likelihood of reaching that providing patients with balanced information a management decision, decreased decisional and decision aids may not be sufficient to alter the uncertainty and increased satisfaction. Among decision-making process.381 women who had an idea about their treatment options from the outset, the decision aid had no However, despite these caveats, the totality of impact on knowledge or satisfaction.388 evidence suggests that, when used as part of a broader support intervention, decision aids It might be hypothesised that providing people help to increase patient involvement in decision with information about various options could be making and enhance patients’ confidence in the overwhelming or lead to uncertainties. However, process.382–383 research does not suggest that using decision aids makes people more nervous, anxious or uncertain There are studies suggesting that decision aids in about their care.389–394 Some studies have found many different formats have benefits, however, few that decision aids can increase anxiety in the short studies compare different types of decision aids or term, but this does not usually last for a significant consider which might work best in various contexts amount of time.395 or for certain audiences. An exception is a US study comparing a standard brochure versus a video Instead, such tools may encourage patients and decision aid about cancer screening in 13 primary their family members to take more responsibility care practices serving racially and ethnically for their care, help people feel more in control, diverse patients in economically disadvantaged encourage health professionals to follow recommended care protocols and have some neighbourhoods. The video decision aid increased 396 knowledge but made people more likely to want impacts on quality of life. to make the decision themselves rather than in A randomised trial of a decision aid for people with partnership with their doctor.384 diabetes found that the tool even improved patients’ Some suggest that decision aids are best when trust of healthcare professionals by increasing 385 knowledge and involvement in decisions and accompanied by training of clinicians. An 397 example of this is a set of decision aids developed reducing uncertainty. for people with suspected stable coronary artery But reviews and studies of decision aids suggest that disease being asked to make decisions about such aids generally affect attitudes and knowledge operations and interventions. Decision aids were rather than behaviours.398–401 implemented alongside Grand Rounds, training

HELPING PEOPLE SHARE DECISION MAKING 17 An exception is in behaviours related to screening an action plan coupled with self-adjustment of tests for cancer and other conditions. Here, there medications and regular medical review for people is some evidence that decision aids may influence with asthma.425–426 behaviours such as either increasing or decreasing screening for cancer or genetic conditions.402–407 Electronic care planning systems have been proposed as a mechanism to support both patient There is no evidence that decision aids increase and professional decision making and to improve patient demand for expensive or inappropriate communication, especially in fields with high staff treatments. In fact, decision aids may support more turnover. A randomised trial in the USA tested a cost-effective care if they help patients choose less community mental health system which allowed expensive treatments, or can be cost neutral.408 patients to build their own care plans electronically during consultations with case managers. Patients One study found that decision aids were associated who used the electronic system were more likely to with significant reductions in the rate of elective recall and adhere to aspects of their care plan, but surgery, with no adverse effects on patient were no more satisfied with care.427 satisfaction or health outcomes.409 Whether written or electronic, there are questions There are mixed findings about whether decision 410–411 about whether action plans and tools to facilitate aids increase the duration of consultations. For joint care planning are favoured by patients and instance, in Belgium a decision aid was tested for professionals428 or directly impact on clinical men with prostate cancer. The decision aid helped outcomes.429–430 men become more active partners in decision making. Men were more likely to discuss issues with Evidence about the impact on healthcare resource their family, were better prepared for consultations use is mixed.431 While some studies have found with their doctors, asked more questions and that action plans and goal setting can reduce were better able to make choices. The decision aid the use of GP and hospital appointments,432–433 improved the quality of the consultation and usually other reviews and trials have found limited resulted in a treatment decision agreed upon by benefits,434–435 particularly for those who have been both parties. However, sometimes consultations hospitalised.436–437 were more time consuming.412 Studies have attempted to explore why action plans work well sometimes and not at other times, but Action plans few firm conclusions are possible. Some studies A proactive care plan or action plan is a document suggest that action plans are most effective for collaboratively designed by service users and engaging patients when they are used as one professionals covering issues, interventions and component of a broader programme.438–439 review processes.413 Action plans may include both goal setting and planning how to achieve these Others have found that action plans work best 440 goals.414–415 Although action plans are not always in primary care rather than in hospital. This positioned as a tool to support shared decision approach may be better as a ‘preventive’ measure or making, these have sometimes been used as tools to to manage stable conditions rather than for those actively engage people in decisions. If constructed with the most severe disease or for those who are 441 appropriately, action plans involve patients and hospitalised for the first time. professionals discussing and agreeing on a course An important component of action plans may of action. Thus they can be key tools for facilitating be joint goal setting.442 Jointly setting goals for shared decision making. treatment and care can encourage patients and There is evidence that action plans or proactive practitioners to identify their core values and planning may improve self-management make decisions together. A number of studies have behaviours for people with long-term outlined the benefits of goal setting, particularly for 443–457 conditions,416–421 and this may impact on healthcare people with long-term conditions. resource use.422–424 Numerous examples are available. For instance, systematic reviews support

18 For instance, a trial in the USA found that improved how patients and doctors perceived personalised goal setting as part of a broader communication and input into decisions. Helping self-management support intervention for older patients structure their communication using a women with heart conditions was associated with written tool helped patients improve the way they reduced days in hospital and reduced overall described their health concerns, organise their healthcare costs.458 needs and questions and be more proactive.474 Opportunities for patients to receive ongoing The World Health Organization has developed support following goal setting may be a key success a tool to support family planning decisions in factor.459–465 This follow-up can be undertaken by developing countries. Tests in Indonesia, Mexico professionals or can be automated using electronic and Nicaragua found that the tool improved the devices such as computer programmes or text extent to which patients communicated and were messages.466 For example, a small randomised trial involved. It also improved the way professionals found that discussions about goal setting which communicated with patients, helping them engage included proactive follow up by professionals people more and provide a better quality and improved the use of community resources, physical quantity of tailored information.475 activity and adherence to medication.467 The difference between these tools and decision Other trials have found improved self-care aids is that communication tools are specifically knowledge and behaviours468–469 and reduced focused on improving consultation skills and hospital admissions and days in hospital when communication techniques, whereas decision proactive follow-up is used.470 support tools may also have these effects but focus more on supporting patients through the steps The best frequency and method for following needed to ask questions and make informed choices. up goals that patients and professionals have set together remains uncertain. A US trial compared telephone follow-up every month or every three Individual education and coaching months. There were no significant differences Research is beginning to emerge about proactive between these follow-up intervals on any clinical educational sessions to support shared decisions.476 outcomes or quality of life.471 This demonstrates A systematic review of 15 initiatives to promote that there is still a lot to learn about the best informed decision making included one-to-one strategies for supporting shared decision making counselling, small group education, strategies using goal setting and follow-up approaches. targeting professionals, technologies and combinations of these approaches. Individual It is also important to note that most studies of counselling and group education were found to action planning and goal setting are focused on improve patients’ knowledge about their conditions broader self-management outcomes rather than and the pros and cons of treatments.477 solely shared decision making. Shared decision making is often seen as a tangential outcome in ‘Decision counselling’ involves one-to-one sessions these studies and a proxy for the wider concept to provide background information and consider of self-management because it is hoped that each decision step in a structured manner. A by sharing in decisions, people will take more randomised trial compared usual care versus a responsibility for their health and care. nurse-led decision counselling session prior to a man’s usual appointment with the GP to discuss Communication tools prostate cancer screening. One-to-one discussion sessions were associated with improved knowledge Good communication is an essential ingredient 472 and more informed decision making, though men for shared decision making but patients and taking part were less likely to be screened compared professionals rarely know what makes ‘good to the control group.478 communication’.473 Therefore tools have been tested to improve communication processes. In the USA, 180 patients were randomly assigned to standard care or to use a written communication tool to facilitate patient–doctor communication. The tool

HELPING PEOPLE SHARE DECISION MAKING 19 Similarly, in the Netherlands, drug users were professionals to use a patient decision tool versus invited to take part in five educational sessions to a standard patient information leaflet. The second support shared decision making. A randomised study compared usual care versus a multifaceted trial found that this approach improved drug use intervention comprising educational materials, an and reduced psychiatric problems.479 educational meeting and audit and feedback. The reviewers reported that it was not possible to draw Some studies are beginning to explore the use firm conclusions about the most effective types of of peer counsellors to support shared decision 480 intervention for increasing health professionals’ making, particularly in mental health. However, adoption of shared decision making. However, this research is in its infancy. training to develop new skills and attitudes may be important, particularly in tandem with patient- Group sessions focused interventions such as decision aids.484 This review identified only a small number of studies focused on group sessions or meetings for Approaches to training professionals patients to enhance shared decision making, but In order for patients and professionals to have a initial indications are positive. more equal role in decisions about care, professionals For instance, 61 inpatients with schizophrenia or need a variety of skills. These range from technical schizoaffective disorder in Germany were randomly communication and interpersonal skills to more assigned to receive training in shared decision fundamental changes in attitudes about the relative making or cognitive training (control condition). roles and expertise of patients and professionals.485–486 Training in shared decision making increased people’s A number of formal training approaches have desire to take more responsibility in treatment 481 been tested to build skills and overcome resistance decisions, which continued to six-month follow-up. to shared decision making among clinicians, Researchers in Australia assessed the feasibility and including at preregistration stage and as continuing acceptability of involving women diagnosed with professional development. In fact, a recent breast cancer in multidisciplinary clinic discussions international symposium identified 53 training and treatment planning. This was valued by programmes specifically about shared decision most patients and acceptable to most health making from 14 countries. These programmes professionals. There was no increase in anxiety.482 varied significantly in scope, duration and approach. The group suggested that more work is needed to develop competencies for shared 3.2 Tools targeting decision making and to accredit continuing professionals professional development initiatives.487 Research suggests that many health professionals There are likely to be many more informal, may support shared decision making, but need help ad hoc or localised programmes.488–489 For to implement it in practice.483 A number of studies example, a randomised trial in Wales, that have tested tools and techniques that professionals involved 20 practices and 747 patients, found can use to better support shared decision making. that training GPs in shared decision making Most of these focus on training to upskill clinicians improved communication and heightened patient in shared decision making. involvement in decisions. Listening, providing easy-to-understand information and a greater A Cochrane systematic review of initiatives to quantity of information, encouraging shared improve the adoption of shared decision making treatment decisions and longer consultation by health professionals identified five relevant durations all improved patient experiences.490–491 randomised trials. Three studies took place in primary care and two in specialised ambulatory Doctors had positive attitudes towards shared care. Four of the studies targeted doctors only decision making from the outset and the training and one targeted nurses only. Only two of the did not enhance views about patient involvement. trials found a significant improvement in shared However, it did increase confidence in shared decision making. The first compared supporting decision making skills.492

20 The researchers found that doctors who received A trial in Germany found that training doctors training in shared decision making reported in shared decision making was associated with positive impacts on their consultation style. improved patient knowledge about their condition However, they said that there was limited and use of medication.505 opportunity to apply their skills and shared decision making tools outside the formal study. Another trial in Germany tested training for GPs were selective about when they felt greater doctors and a computer-based decision support patient involvement was appropriate and feasible, tool for patients. One group of patients had access rather than trying to apply shared decision to the computer program and gained care from making approaches to most consultations. They doctors who had received training. Another group attributed this lack of implementation to consumer had access to the computer program and gained preferences for low levels of involvement and the care from doctors who had not been trained and limited time available in consultations.493 the final group received usual care. The training and the decision aid were both associated with Examples are available from other countries too. increased involvement in decisions about treatment A small randomised trial in Canada found that and better treatment decisions.506 continuing medical education for GPs about shared decision making helped to reduce the unnecessary A training programme about shared decision use of antibiotics. GPs took part in three three-hour making in depression was developed for 20 GPs workshops over a four- to six-month period.494 in Germany. The training included depression- specific components regarding diagnosis, patient Elsewhere in Canada, training for GPs was also information and therapy and general components found to be feasible and to help GPs change their such as communication and shared decision consultation style.495 making skills. Five sessions were run over a six-month period, totalling 20 hours of training. A randomised trial in the USA tested shared GPs reported that they were able to use the skills decision making training for hospital doctors learnt in routine practice.507 treating people with chronic pain. The training involved two one-hour sessions. Those who took However, elsewhere in Germany, training GPs in part in the training reported better relationships shared decision making did not improve the clinical with patients, greater doctor satisfaction with care, outcomes of patients over a year-long period.508 better use of time and more appropriate care.496 Other studies have found inconclusive results.509 Elsewhere in the USA, a programme was tested The literature leads us to suggest that training to help clinicians involve patients in shared tends to be associated with improved skills and decisions about end-of-life care. The programme knowledge, but not necessarily better outcomes for included six hours of workshops and two hours patients. of one-to-one interaction between trainers and clinicians. Doctors, medical students, social For instance, a randomised trial in Germany workers and nurses took part. Evaluations found tested shared decision making training for doctors some improvement in clinicians’ skills.497 supporting people with fibromyalgia. All patients received access to a computer-based information In Germany, a number of voluntary training package and were treated by a doctor as usual or programmes about shared decision making have a doctor trained in shared decision making. The been developed for doctors.498–503 For instance, training improved interactions between patients a study of 150 doctors taking part in an eight- and doctors but did not impact on choices or hour programme found improved knowledge clinical outcomes.510 and confidence about shared decision making. Experienced, middle aged doctors were more Most published articles about training approaches likely to take part in the training, particularly GPs describe whether the programme improved the and those with positive attitudes towards shared knowledge and attitudes of professionals. Some also decision making from the outset.504 examine skills and behaviour change. However, few examine the follow-on impacts for interactions with patients, clinical outcomes or value for money.

HELPING PEOPLE SHARE DECISION MAKING 21 Most studies do not provide enough details of In Belgium, clinical practice guidelines were what was included in the training or what teaching used to support shared decision making when methods were used to allow such programmes to be introducing assistive devices in home care. replicated in other settings. Surveys with 116 home care workers and nurses and 140 people with disabilities found that nurses From the limited information available, it appears thought that the guidelines increased shared that the most successful courses tend to include decision making but this effect reduced over time. content to encourage professionals to respect patients’ Patients generally did not think the guidelines had autonomy and use strategies such as skill building made a difference.522 workshops, electronic tutorials, familiarisation with decision aids, structured decision support protocols, practice with real or simulated patients 3.3 Targeting systems issues 511–515 and feedback about performance. Most interventions target patients or professionals, usually as separate groups. Apart from studies Journal articles described in other sections, this review did not Another strategy to support shared decision identify empirical evidence about system or making involves published articles for organisational level interventions to support shared professionals. decision making. Researchers in Canada explored whether journal 3.4 Summary articles for professionals might improve shared decision making. They assessed 30 articles about Strategies to increase shared decision making have clinical topics published in five peer-reviewed predominantly targeted patients, although some and non-peer-reviewed medical journals, offered interventions to support and educate professionals without charge to primary care doctors. The articles have also been tested. Research suggests that the tended to focus on describing health conditions most effective strategies may include: and treatment options. Possible harms and 523–528 methods to help communicate about benefits and – decision aids of various types harms to patients were almost never described. – action plans and goal setting529–533 The researchers concluded that continuing medical – structured one-to-one or group support for education articles may not include the information patients534–539 needed to support shared decision making in clinical practice.516 – training to enhance the skills of professionals.540–547 Prompts, reminders and guidelines For both patients and professionals, the range Prompts and reminder systems to support shared of initiatives tested lies along a continuum with decision making have been tested, with mixed passive information provision at one end and success.517–519 more active support at the other. There is no clear evidence about which approaches are most For instance, in Norway a computer system effective, but the evidence suggests that proactive was developed to remind nurses and doctors to strategies may be necessary to sustain change. facilitate patient choice among people with cancer. Interviews with nurses and doctors found that Crucially, however, it is important to see these the system was well used, especially by nurses. approaches as tools rather than as an end in No information was available about the effect on themselves. The most fundamental requirement to patient outcomes.520 enhance shared decision making may be ensuring that patients and professionals both support Nurses in Norway also tested a palm top-based and see the value of this.548–549 There is no strong decision support tool to help elicit patient evidence about the best ways to facilitate such an preferences for care in hospital. The tool helped underpinning change in culture and attitudes. to change nursing care to be more consistent with Training sessions may play a role, but cannot be 521 patient preferences. relied on alone to facilitate change.550

22 Chapter 4 Facilitators and barriers

In addition to research about specific tools and Patient demographic characteristics techniques for implementing shared decision Demographic characteristics such as age may making, studies have also examined factors that influence the extent to which people want to may act as facilitators or barriers. This chapter share in decisions. For instance, reviews and outlines some of the factors that may help or hinder studies suggest that younger people are more the embedding of shared decision making into likely than those over 60 to want to take part in everyday care. decision making,557–561 though this is not always the case.562–563 4.1 Characteristics of patients Research suggests that some older people may Values and attitudes of patients prefer a more paternalistic or directive style of interaction with clinicians.564 In fact, one US study The attitudes, opinions, emotional readiness and found that about half of older people preferred a life experience of patients may influence the extent passive role in healthcare decision making.565 to which they want to share in decision making or feel comfortable doing so.551–554 There are examples of this trend from many parts of the world. For example, a study in Switzerland For instance, researchers in Canada found that found that two-thirds of people wanted to leave women considering screening for anomalies during decision making to their doctors. Those who pregnancy were more willing to engage in shared preferred shared decision making were more decision making if they had positive attitudes, good likely to be younger, better educated and in more self-efficacy and if they thought that their GP had a discomfort.566 positive attitude.555 Another survey of 1,040 people recently discharged A systematic review of 40 studies found that from hospital in Switzerland found that older interpersonal relationships, preservation of current people and those who were less educated were wellbeing, quality of life, need for control and more likely to think that advice from doctors perceptions of benefits and risks for individual should not be questioned and that doctors should circumstances were all important when people with have control over all healthcare decisions.567 chronic kidney disease made decisions.556 A national survey of 999 people with long-term Patients’ attitudes and values are likely to interact conditions in Australia examined how different with the attitudes and behaviours of professionals relationships between patients and professionals to influence shared decision making. Research may impact on shared decision making. Patients about these interactions is summarised overleaf. aged between 18 and 34 years were more likely to have an unhappy relationship with clinicians and were less likely to share in decisions about

HELPING PEOPLE SHARE DECISION MAKING 23 their care. Those aged 65 or older were more likely In England, investigators found that 40% of people to have, and to be happy with, a paternalistic or wanted to be involved in decisions about heart care. clinician-directed relationship.568 There were no differences in terms of age, gender or ethnicity. Cardiologists were more likely to involve Another national survey in Lithuania found that patients in decisions about severe disease.583 younger and more educated people have less trust in the healthcare system and are more motivated to The cultural and sociopolitical context of healthcare play an active role in healthcare decision making.569 might be an important facilitator of shared decision making that interacts with patient demographics.584 However, there is evidence that older people can Researchers compared preferences for shared be engaged in shared decision making with the decision making among more than 2,300 people right type of support and when they trust their 570 from eastern and western Germany. People in clinicians. eastern Germany had less preference for shared Preferences for involvement may not remain stable decision making than those in western Germany, over time. Researchers in Germany found that even after controlling for demographic variables. people may want to be more involved when they The researchers concluded that cultural values have are younger but to change and want more doctor- a significant influence on people’s expectations and led decisions as they get older.571 behaviour in healthcare encounters.585 There are no consistent findings about the Similarly, comparisons between Japan and the impact of gender.572–573 A survey of elderly people USA have found that Japanese people may be more hospitalised in Sweden found that gender did not likely to prioritise autonomous patient decision influence the extent to which people wanted to be making compared to US patients who prefer shared involved in decisions.574 But a study in the USA decision making. Despite the cultural differences, found that men might be more likely to be involved in both countries people wanted to participate in some healthcare decisions than women.575 more in decision making.586 On the other hand, researchers in the USA It is unclear whether there are any ethnic compared the perceptions of women and men differences in preferences towards shared decision regarding involvement about decisions in hospital making in healthcare.587 Most work in this area following a heart attack. Younger patients and is based in the USA, where research suggests women placed significantly more value on shared that black and Hispanic people are more likely decision making than men. Women were more to experience lower quality communication with likely to be dissatisfied with the level of involvement health professionals and are less likely to share they had.576 These findings have been replicated in decision making than white people.588–590 This may, other studies, care contexts and countries.577–580 in turn, contribute to health disparities.591 A postal survey with more than 2,300 members Studies have found that black people in the USA of the general public in Switzerland found that, believe that the communication skills and attitudes on average, people favoured shared or active of professionals can have a significant impact on involvement in medical decisions, but attitudes their involvement in healthcare decisions.592 For varied considerably. Those who wanted greater example, black people report that doctor bias levels of involvement or autonomy were more likely or discrimination and cultural discordance may to be women, younger, more highly educated, living influence the extent of shared decision making alone, reporting good health and have experience in consultations.593 Doctors might be less likely in making healthcare decisions.581 to share information and more likely to be domineering with black patients. Black people have Yet, research in Germany found that although reported a range of other barriers to shared decision educational background and age influenced the making including mistrust of white doctors, extent to which patients wanted to have some negative attitudes, internalised racism, not being control over treatment decisions, there was no forthcoming with doctors about health information, difference between men and women or based on having greater deference to doctors and being less 582 medical or treatment characteristics. likely to adhere to treatment regimens.594

24 A study of the barriers and facilitators to shared Feedback from 100 people living in care homes in decision making among black people with diabetes Canada found that those with higher levels of formal identified imbalances in patient–clinician power education, a greater number of long-term conditions that were perceived to be exacerbated by ethnicity, and greater confidence about the worth of their poor health literacy, fear and denial, family input tended to prefer more active involvement in experiences, self-efficacy and clinician accessibility decision making.607 and interpersonal skills.595 In Germany, 203 people with schizophrenia or However, a large survey in 17 US states found that multiple sclerosis were surveyed about whether ethnicity did not influence whether or not people they wanted to share in decision making about wanted a shared role in agenda setting, information their care. People who were more highly educated, exchange or decision making. In some instances who were not satisfied with their treatment and black patients were more likely to report initiating who thought that they had good decision-making discussions with their doctors than those from skills were more likely to want to be involved in other ethnic groups and black people wanted decision making. People who thought that they had shared decision making just as much as other poor capacity to make decisions and those who patients.596 were less well educated preferred not to participate in decision making.608 The extent to which these findings are generalisable to ethnic minorities in countries such as England is A survey of people from Germany and the USA uncertain. found that those with low numeracy often wanted to be more passive in decision making than they There is some evidence that professionals may treat currently were. On average, Americans reported minority ethnic groups differently to white people. being more active than Germans during healthcare For example, interviews with obstetricians, GPs and decision making and middle-aged participants midwives in England found that clinicians thought preferred to be more active compared to both that involving people in decisions about their care younger and older people. The researchers was a key element of their role. But professionals concluded that shared decision making preferences sometimes used cultural differences between are related to numeracy skills, country and age.609 patients to justify not involving minority groups as much in shared decision making. Minority ethnic Other researchers in the USA found that those groups were judged by clinicians to be more passive with low numeracy were often less satisfied with and less rational in decision making.597 how clinicians communicated, and involved them in, decisions, and they were less likely to take up Similarly, research with immigrants in the preventive screening opportunities as a result.610 Netherlands identified a number of barriers to shared decision making including linguistic A study in England found that people with less issues, patients and clinicians not having similar formal education reported greater levels of benefit values about health and illness, not having similar from a decision aid, but quantitative analyses found expectations about roles, and patients and doctors that the intervention provided the greatest benefit having prejudices and speaking to each other in a in those with higher levels of education. Thus there biased manner.598 was a difference between what people perceived and objective data.611 Education may also play a role, with people with higher formal education often attributed as being American research has found that people with more engaged in decision making or wanting to be higher socioeconomic status might be more more engaged.599–605 likely to want, and to experience, shared decision making.612 Other studies have linked involvement A study in Canada found that less educated in decision making to employment status.613 women were less likely to engage in shared decision making, largely because they lacked confidence Analysis of national data in the USA also found in their ability to understand information and that families in poorer health may be less likely make decisions.606 to perceive that they are involved in shared decision making.614

HELPING PEOPLE SHARE DECISION MAKING 25 To summarise, there is no clear-cut evidence about 4.2 Characteristics whether people from various age, ethnicity, gender, education and socioeconomic groups are more of professionals or less likely to desire or to achieve shared decision making, but some demographic differences Attitudes of professionals are likely. The attitudes and skills of healthcare professionals can have a significant effect on the extent to which The important point is that patients are not a people feel engaged and supported.626–631 People homogeneous group. Just as each person has who feel supported by their doctors and nurses may different medical conditions and health behaviours, be more ‘activated,’ more satisfied and have better so too do they have differing values and opinions outcomes.632–634 This suggests that the attitudes regarding the extent to which they want to be and roles of clinicians are essential components of involved in decisions. It is important to recognise shared decision making.635 these differences, and how they may be shaped by age, gender and ethnicity, so as not to assume that Obtaining buy-in from clinicians, particularly everyone wants the same level of involvement in doctors, may be one of the greatest challenges in decision making:615–616 increasing the uptake of shared decision making.636 Buy-in from clinicians may be dependent on The engagement of patients in medical professionals recognising that there is a problem decisions might not be susceptible to or issue and believing that there is an easy and a ‘one size fits all’ approach; doctors practical solution to that problem.637–638 should instead aim to accommodate the Professionals need to be convinced that the individual patient’s desire for autonomy.617 advantages of shared decision making for patients, themselves and their systems outweigh any Perceived knowledge of patients perceived disadvantages of changing traditional The extent to which people have appropriate practices.639 There may be tensions between information or feel knowledgeable may influence clinicians’ desire to respect patients’ preferences whether they feel confident sharing in healthcare while simultaneously applying guidelines and decisions.618–619 Self-efficacy may play an important current best practice.640 role.620–621 Emotional, cognitive and skill barriers can get in Research in Italy found that most people wanted the way.641 Contextual factors and perceptions of to participate in decision making, but felt that patient readiness can be important here. substantial gaps in their knowledge was a barrier. Only a small proportion of patients expressed Doctors express differing support of opinions and questions during consultations and patient involvement in decision making clinicians did not usually facilitate questions or dependent on context, impact and effect encourage involvement.622 that involvement may have. Doctors Similarly, interviews with people in the USA found described meeting patient involvement that a perceived lack of knowledge, low self-efficacy preferences as a challenge, and needing to and fear were barriers to older people participating identify different characteristics, anxiety in decisions.623 levels and levels of understanding to guide them to involve patients in decisions.642 Furthermore, the perceived knowledge and capacity of patients affects how healthcare professionals In other words, professionals’ beliefs about the involve them in decision making.624–625 Professionals value and ease of shared decision making can be a may think that patients have insufficient knowledge facilitator or a barrier. For instance, professionals to participate in decision making, even if this is not supporting women with early-stage breast cancer the case or if steps could be taken to mitigate this. in Canada said that they supported shared decision making but felt that their patients would not

26 understand information or were not ready or Professionals’ demographic willing to participate in treatment decisions.643 characteristics There may be biases against certain types of There is mixed evidence about whether patients, such as those who are older or less professionals’ demographic characteristics educated.644 influence the extent to which they encourage Similarly, a British study investigated the views shared decision making.648–650 of orthopaedic surgeons about the potential of Some have found no differences in professionals’ decision aids for hip and knee replacement surgery. attitudes and behaviours based on age, gender or Most were positive about the concept of shared ethnicity. For example, a survey of cancer doctors decision making but none had used decision in Asia, Australia, Canada, Europe and the USA aids. Surgeons said that they would be likely to found that 71% believed that patients and family use decision aids if there was evidence that they members should be involved in decisions about improved patients’ understanding, enhanced their treatment. Doctors of different ages, genders, communication and helped patients clarify what country, specialty or years in practice were no more is important to them. However, surgeons said or less likely to support shared decision making.651 that they would be unlikely to support the use of decision aids if they increased workload, were not However, other studies have found that the traits kept up to date and if patients disliked them.645 of professionals may impact on shared decision making. A survey of GPs from throughout England Elsewhere in England, online decision support found that female doctors and those working in tools are being made available for women facing larger practices were more likely to believe it was challenging decisions, such as the choice between important to share decisions about referrals for mastectomy and breast conservation surgery for surgery with their patients.652 breast cancer. Interviews with surgeons, nurses and oncologists from four hospitals and national Similarly, analysis of audio-recorded consultations opinion leaders found that many did not have a in Germany found that female GPs were more working knowledge of decision support tools and likely to involve patients in decisions about their were ambivalent or sceptical. Some expressed care.653 The same has been found among female conflicting opinions: on one hand they noted the doctors in Australia.654 potential benefits of decision aids, but at the same time they had reservations about information In contrast, studies in the USA suggest that female overload and about content that they considered doctors and doctors with less clinical experience inappropriate. Many wanted patients only to have may be less likely to want to disclose uncertainty about treatments during consultations, which in access to decision support tools under clinical 655 supervision because they were concerned that these turn impinges on shared decision making. tools might make patients feel anxious and might In Switzerland, more experienced hospital doctors 646 impinge on the professional’s role. have been found to be more likely to support 656 Researchers in the USA surveyed primary care shared decision making than newer recruits. clinicians regarding patient decision aids about But observation of 287 patient interactions in the colorectal cancer screening. More than six out USA found that older doctors were least likely of 10 thought that decision support tools could to engage in shared decision making.657 This increase patient knowledge, help patients identify a corresponds to a survey in Germany which found preferred screening option, improve the quality of that younger doctors are more likely to support decision making, save time and increase patients’ shared decision making.658 desire to get screened. However, clinicians did not necessarily think that such tools improved the overall quality of care or patient satisfaction. Less than half thought that such tools would be easy to implement in routine practice.647

HELPING PEOPLE SHARE DECISION MAKING 27 4.3 Patient–professional In Canada, researchers found that doctors changed the extent to which they supported shared interactions decision making behaviours according to patient factors, including anxiety.670 Other studies have Dynamic process also highlighted patient anxiety as a potential Shared decision making is a dynamic process in barrier and something that influences clinician which patients and doctors influence each other.659 behaviour.671 The characteristics of patients and professionals Further weight is given to the findings of these may interact to influence the extent of shared studies by a meta-analysis examining the decision making.660–665 interactions between patient and professional Research in England found that: characteristics. Professional influences on shared decision making included receptiveness to Participation [in consultations] is seen informed patients and patient centredness. Patient as being co-determined by patients influences were motivation and active appraisal and professionals, and occurring only of information before a consultation. Shared through the reciprocal relationships of influences included differing notions of illness and dialogue and shared decision-making. Not decision making, role expectations and language.672 everyone wanted to be involved and the extent to which involvement was desired Concordance of views depended on the contexts of type and Shared decision making may improve clinicians’ seriousness of illness, various personal satisfaction with the care process and perceived characteristics and patients’ relationships therapeutic alliance.673 However, research suggests with professionals.666 that in order to heighten satisfaction and positive outcomes among patients and professionals Interviews with patients in the USA found there needs to be concordance between patient that five elements were repeatedly described as preferences for involvement and clinician being essential to enable patient participation behaviour.674–675 in healthcare decisions: patient knowledge, explicit encouragement of patient participation, There may be important links between the attitudes appreciation of the patient’s responsibility to play and behaviours of professionals and what they an active role, awareness of choice, and time.667 perceive patients think and want. Investigators This emphasises that a dynamic mix of patient, in the USA examined how the way 1,500 doctors professional and system level characteristics were communicate uncertainties is influenced by important. their own comfort levels and perceptions of patients’ tolerance of uncertainty. Communicating Similarly, focus groups in France found that uncertainty about the benefits and harms of patients supported shared decision making, different treatment options is a component of particularly when this was actively promoted by shared decision making. The medical specialty doctors. Facilitating factors included trust, good of doctors and other demographics predicted non-verbal communication and allowing people their attitudes towards communicating scientific time to think. Obstacles included perceived uncertainty. inadequate knowledge, problems making requests and fear of knowing.668 Furthermore, doctors’ beliefs about their patients’ aversion to ambiguity were important. Doctors who A survey of 41 GPs and 829 of their patients thought that their patients would have negative conducted in Norway found that GPs preferred reactions to ambiguous information were more shared decision making, but to a lesser extent than likely to think that they should decide what is best patients. GPs’ attitudes towards shared decision for their patients and to withhold an intervention making affected patient satisfaction.669 that had uncertainty associated with it.676

28 In Germany, more than 400 psychiatrists and failure stories; asking for input only about small surgeons were surveyed about patient behaviours technical details of little consequence; and using they found helpful and detrimental for shared plurals and authority. The investigators suggested decision making. When patients searched the that shared decision making may be advocated internet or were assertive towards the doctor, as a philosophical value, but it is not necessarily this sometimes provoked ambivalent or negative implemented in actual communication with attitudes in professionals. The investigators patients:686 suggested that doctors say that they are open towards the concept of shared decision making Shared decision making does not happen during consultations but in reality they do not like with the ease implied by current models to feel challenged. They may become annoyed if and appears to work to maintain a patients insist on their preferences and doubt their biomedical ‘GP as expert’ approach rather doctors’ recommendations.677 than one in which the patient is truly involved in partnership... Further research Communication style on the impact of conversational activities There is evidence that communication between is likely to benefit our understanding patients and professionals can help or hinder of shared decision making and hence shared decision making.678–681 Interactions between training in and the practice of shared patients and professionals are shaped by the decision making.687 characteristics and attitudes of both parties as well as the culture and infrastructure within which they Conflicting priorities and responsibilities are operating.682–683 may impact on patients’ and professionals’ communication style. Interviews with GPs and A study in Switzerland found that the use of allied health professionals in Australia found that facilitators, open questions and emotional practitioners thought that there was a conflict statements by professionals was associated with between professionals’ responsibility to deliver 684 higher patient involvement. evidence-based care and the need to respect Researchers in Scotland examined characteristics patients’ right to make decisions. Professionals of interactions between patients and professionals differed in the emphasis that they placed on that were more likely to lead to shared decision ‘treating to target’ or practising ‘personalised making in general practice. Facilitators included care’ and this influenced the extent to which using first person pronouns during conversations, they involved patients in decision making. Those supporting patients so that they felt their requests preferring to ‘treat to target’ were more assertive were successful, supporting doctors’ agendas and directive in their approach whereas those who and reducing their responsibility for decisions supported ‘personalised care’ were more accepting made. Perhaps, counter-intuitively, when doctors of the patient’s priorities. ‘Treating to target’ talked about ‘partnership’ this tended to invite meant involving patients, where necessary, to consensus and acceptance of GPs’ views rather tailor care to their needs and abilities, but limiting than real involvement and debate from patients. patient involvement in decisions about the overall Thus the wording used during consultations might agenda. Those more focused on ‘personalised care’ influence whether patients are encouraged to share tended to involve patients to tailor care to patient decisions or just agree with decisions being made preferences. Professionals often thought that it was by professionals.685 not possible to respect a patient’s autonomy while still delivering high-quality evidence-based care.688 Similarly, researchers in Israel found that doctors used certain language, syntax and different A study of women with breast cancer in Korea sources of power to persuade patients to agree found that women’s treatment decisions might with their preferred treatment choice rather than be shaped by the information provided by their make real shared decisions. The tactics included doctors and that women might request different ways of presenting the illness, treatment and side information from their doctors based on their 689 effects; providing examples from other success or preferred treatment options.

HELPING PEOPLE SHARE DECISION MAKING 29 Support versus prescriptive advice Another study found that one-third of elderly There is evidence that shared decision making people hospitalised in Sweden said that they works best when clinicians focus on both experienced barriers to shared decision making providing information and managing emotions including the severity of their illness, doctors and patient views.690 with different treatment strategies and difficulty understanding medical information. The In Australia, the cognitive and emotional aspects researchers concluded that professionals are of shared decision making were analysed in not responsive to patient preferences regarding consultations with 55 women with breast cancer. communication or the patient’s participation Good information provision and communication in decision making and that providing support predicted patient satisfaction, but good support to make decisions may be just as important as and picking up on emotional cues affected the providing information and advice.696 extent to which patients felt reassured or anxious. Thus shared decision making is not merely a Trust technical process of going through options and Trust between patients and clinicians has also been communicating benefits and risks. It is also about identified as a potential facilitator or barrier in a taking into account people’s feeling and values and number of countries.697–706 providing reassurance and support as needed.691 A survey of 606 patients in Canada found that Support can also come from family members. There those who had blind trust in their doctors wanted is evidence that patients who are accompanied to doctor-led decisions, those who did not trust their consultations and those who have a supportive doctors wanted to make decisions themselves home environment may be more likely to share and those who had high, but not excessive, trust decision making.692 supported shared decision making. Trust had a Patients’ treatment decisions are significantly significant influence on preferred role even after influenced by professionals’ recommendations controlling for demographic factors such as gender, and the support that clinicians provide during the age and education.707 decision-making process.693 Research suggests that doctors’ recommendations can lead people to make 4.4 Characteristics decisions that go against what is best and against what they would otherwise prefer.694 of decisions Researchers in Germany investigated whether Characteristics of treatment decisions may doctors’ recommendations pulled patients influence how feasible it is to share these decisions away from their preferred treatment options between patients and professionals. These or whether they supported patients to make characteristics include whether there is a strong informed choices. More than 200 people with evidence base for the most appropriate treatments, schizophrenia or multiple sclerosis were presented the specific illness or condition being considered 708–709 with a hypothetical scenario and asked about and the type of treatment being offered. their preferences. They then received a fictitious clinician’s recommendation that was contrary to Is there a solid evidence their preferences and were subsequently asked base for care? to make a final choice. 48% of the people with Research has examined whether some types of schizophrenia and 26% of those with multiple decisions are more amenable to shared decision sclerosis followed the advice of their doctor and making than others. By definition, shared decision chose the treatment option that went against making is designed to be used when various their initial preferences. Patients who followed options are available and where there is no one best the doctor’s advice were less satisfied with their course of action for everyone.710 Thus, emergency 695 decision. situations and instances where there is just one evidence-based approach may fall outside the scope of shared decision making.

30 In Canada, researchers found that people followed be made by informed patients rather than through their doctor’s recommendations because they shared decision making. Paternalistic decisions believed that there was no choice of treatments or were considered most appropriate in emergency because there was only one ‘best choice’.711 Despite situations and when patients did not want to this, interviews with cancer doctors in Australia participate in decision making.718 found that even when there may be a readily perceived ‘best’ or clear-cut course of action, there Some suggest that in instances where patients are was still scope for shared decisions based on the overly stressed, where they do not feel that they impact of treatment on patients’ quality of life and have the capacity needed to understand decisions, self-image.712 where there is a lack of supporting information and when people are approaching the end of life Interestingly, a survey of more than 5,300 people it may not be most appropriate to share decision recently diagnosed with cancer in the USA assessed making.719 if characteristics of the decision influenced patients’ roles in decision making, such as evidence about In terms of end-of-life care, however, issues may treatment benefits, whether the decision was be more a function of the systems and processes used, rather than an inherent problem with the preference sensitive and treatment modality. 720–721 Patients thought that they had controlled around topic area. A review of 18 studies found a strong link between shared decision making and two-fifths of decisions, two-fifths were shared and 722 one-fifth were doctor controlled. Shared decisions having a ‘good death’. However, a systematic were more likely when there was good evidence review of 37 articles found that while most people to support a treatment. When evidence was want to participate in end-of-life decisions to some uncertain, patient control was greatest and when extent, the majority do not achieve their preferred there was no evidence for, or evidence against, a levels of involvement because decisions are delayed and alternative treatment options are seldom treatment, doctor control was greatest. Decisions 723 about treatments for the most serious and advanced discussed. cancers were more likely to be controlled by It might be assumed that shared decision making doctors. The research suggested that patients relies on good mental capabilities, but studies with may not want the responsibility of deciding on the frail elderly and people with mental health treatments that will not cure them or where there is issues, including serious psychiatric conditions, no evidence.713 have found that shared decisions are possible, welcomed and can be encouraged.724–727 Even Diseases and conditions people with dementia or schizophrenia can be People with certain illnesses might want to be more involved in discussing healthcare options in 728–729 engaged or be more amenable to shared decision relation to their values and preferences. making than others.714 For example, a study in Therefore there may not be automatic barriers to Germany found that people making decisions about this approach based on the topic area or nature of solid cancer tumours were more likely to want to people’s conditions. share in decisions than those with haematological On the other hand, interviews with people with 715 cancer. The reasons for this are unclear. schizophrenia in Scotland found that most Alternatively, clinicians may view some conditions were happy to leave decisions about treatment as being more amenable to shared decisions than to clinicians and few sought any role in shared others.716–717 decision making. The researchers emphasised that it should not be assumed that all patients want Interviews with patients, GPs, health managers and to take responsibility for their medications and researchers in Germany found that shared decision decisions.730 making was considered most important for people with severe illness and long-term conditions. Participants suggested that end-of-life decisions and decisions about prevention should primarily

HELPING PEOPLE SHARE DECISION MAKING 31 Type of care thing and then ruling out all other alternatives. The type of care being decided on may act as a Sometimes alternatives are tried in succession or 736 facilitator or barrier to shared decision making.731 simultaneously. Interviews with primary care clinicians in England 4.5 Culture and infrastructure suggested that while professionals wanted to be patient centred, they thought that some things Components of organisational infrastructure and were not appropriate for shared decision making. culture that may impact on shared decision making Making decisions about examinations, ordering include737–744: tests and biomedical aspects of care helped to – policy context745 reinforce the professional identity of practitioners and ‘made them doctors’. These decisions were not – health service culture746 felt to be appropriate to share.732 – leadership support747 Researchers in the Netherlands examined whether – involving nurses and allied health professionals, the type of care to be decided on influenced not just doctors748 whether more than 800 people with long-term 749–751 illnesses and disabilities wanted to have a shared – training for professionals role. Patients attached most importance to shared – professional attitudes and motivation752–756 decision making when occupational healthcare issues were at stake, but they thought that they had – social support and the opinions of family 757–760 relatively low involvement in these decisions.733 members – time761–769 Studies in the USA found that people with severe mental illness wanted to be more involved in – incentives and disincentives770 decisions about their care. Patients tended to be – fears about managing risk, malpractice and happy enough with a passive role about general litigation771–773 medical care, but wanted to be more actively engaged in decisions about medication and – supportive practice settings and access to care774 734 psychiatric care. – availability and appropriateness of supportive 775–777 A survey of psychiatrists in Germany found that tools shared decision making was seen as useful for well – evidence that shared decision making informed and compliant people and for those who is effective.778–779 disliked their medication. Shared decision making was not seen as useful in cases of potentially A systematic review of 38 studies of health reduced decisional capacity. Psychosocial professionals’ views about the barriers and topics such as work therapy, future housing and facilitators to shared decision making found that psychotherapy were considered more suitable by time constraints were the most frequently reported clinicians for shared decision making than were problem, followed by a perception that shared medical and legal decisions such as hospitalisation, decision making was not appropriate or worthwhile 735 prescriptions and diagnostic procedures. for patients or a particular clinical specialty. Although it appears that the type of care being The three most commonly suggested facilitators discussed may influence the extent to which people were motivation among professionals and evidence want to be involved in decisions and the extent of positive impacts on the clinical process and on to which professionals believe this is acceptable, patient outcomes.780 there are no clear-cut ‘rules’ about which types of decisions are most appropriate for shared decision Research suggests that implementing strategies making. Furthermore, treatment courses are often to support shared decision making may require a continuous process in which options remain changes to infrastructure and have resource open. It is not a matter of deciding to do one implications. Clinicians often stress practical

32 barriers to shared decision making such as 4.6 Summary administration and timing.781 For instance, in Britain a structured decision aid was used to A wide range of factors may act as facilitators check patients’ understanding and treatment or barriers to shared decision making including preferences in urology, but this involved additional characteristics of patients and professionals, the administration. Including the decision aid in assumptions and biases of both parties, the way existing clinical pathways was not always easy and patients and professionals interact, and the culture 801–807 could involve booking an additional appointment and infrastructure of healthcare systems. or posting or emailing the tool to patients in The totality of evidence implies that showing advance. This led to more work for nurses and patients and professionals that shared decision 782 administrative staff. Systems had to be set up to making has benefits and can be implemented support the roll out of this decision aid. relatively easily may be an important driver 808–809 The time allocated to consultations may also make for change. 783–784 a difference. Observations in hospital and From the literature we can surmise that merely in primary care suggest that longer consultations making information and decision support tools are more likely to include shared decision making widely available is unlikely to be sufficient to 785 behaviours and interviews with professionals encourage shared decision making.810 Instead, suggest insufficient time as a major barrier to it is important that information and tools 786–796 shared decision making. are accompanied by appropriate support and 811 Timing issues may impact on how professionals encouragement to use them. Professionals may communicate and whether they use decision aids need to signpost patients to appropriate tools that could enhance shared decision making.797 and adapt their practice styles and consultations to provide active support for people wanting to The structure and complexity of care processes participate in decision making.812 This requires may also have an impact. Interviews with people motivation from individual clinicians as well in the USA found that the expanding number as a supportive infrastructure and culture in of medications available and multiple doctors healthcare services, including sufficient time to prescribing for the same patient were barriers to promote shared decision making.813–815 In order to shared decision making.798 implement shared decision making widely, policy makers and practitioners need to move from Most studies and models of shared decision talking about this approach towards ensuring that making do not account for interprofessional patients and professionals are engaged and have the work or the need for multiple professionals to necessary resources.816 interact with patients about their decisions.799 Researchers in Scotland found that the dynamics of interprofessional work shaped older patients’ participation in decision making about discharge from hospital. Observation and interviews undertaken over a five-month period found that patients and staff had a different understanding about decision making and varying priorities. Care routines centred around assessments and tended to exclude patients from active decision making. The researchers concluded that the organisational context shaped patient and staff interactions and privileged the views of staff over patients and family members.800

HELPING PEOPLE SHARE DECISION MAKING 33 Chapter 5 Issues that need more attention

Shared decision making aims to support patients Initially research about shared decision making to articulate their understanding of their condition tended to focus on acute treatment or screening for and what they want to achieve from treatment, cancer, genetic issues or other conditions. However, inform patients about their condition and the pros in recent years there has been more focus on shared and cons of available treatment options, ensure that decision making in primary care and supporting patients and clinicians come to a decision based on people with long-term conditions.826 a mutual understanding of this information and record and implement the decision reached.817 Many researchers in this field meet every two years at an International Shared Decision Making Research suggests that patients want to be Conference. The Salzburg Statement on Shared respected, listened to, valued and given honest Decision Making was also launched in 2011. information and that many want to share in This postulates that it not only is feasible and decisions about their care, at least in terms of being appropriate for patients to be involved in decisions involved in discussions.818–822 However people about their care, but also an ethical responsibility.827 are not always given an opportunity to share in decisions to the extent they wish.823–824 A great deal has been written about shared decision making and numerous studies are Although there is a debate about how to define currently underway including tests of decision shared decision making and how to promote support tools,828–830 evaluations of training for and implement it in day-to-day practice, there is professionals,831–834 studies of how policy, guidance evidence that shared decision making and decision and frameworks may be important835–836 and aids can support a patient-centred approach.825 examinations of how shared decision making works in practice.837–842 However, much is left to However, there is a lot more to learn about how learn.843 Gaps in knowledge include defining shared shared decision making works in practice, which decision making, understanding how to develop strategies work best and how to implement shared new relationships and partnerships between decision making day to day. This chapter briefly patients and professionals, learning how to engage explores issues in need of further examination. The clinicians and transmit the attitudes and skills points raised have emerged from synthesising the they need to help patients share decisions, and the literature, but this chapter provides an informed best tools and strategies to embed shared decision narrative rather than a listing of research findings. making in routine practice.

34 THE HEALTH FOUNDATION 5.1 Scope of shared A study in England illustrates these complexities well. Researchers studied treatment decisions decision making about breast cancer by observing consultations and exploring patients’ and doctors’ perspectives. Defining shared decision making Twenty consultations were audiotaped and While the broad principles of shared decision each patient and their surgeon was interviewed making have been written about extensively, separately within a week of the consultation. reviews suggest that there is a need for clarity about Surgeons made most decisions for patients and the fundamental meaning and the underlying only offered choices where treatment options were purpose of shared decision making.844–845 Various clinically equivocal. Thus shared decision making definitions of shared decision making are used, was largely absent. However, patients generally illustrating differences of opinion about the said that they felt that they had ownership of the purpose of this concept.846–847 decisions because surgeons provided justifications for the choices and because patients knew that It may be important to be clear about whether the they could refuse. Furthermore, when asked to aim of shared decision making is about setting out make choices and share decisions, patients often options so that patients can agree with the option lacked trust in their own decisions and usually recommended by professionals or whether the sought surgeons’ recommendations.864 Thus aim is to empower patients to take responsibility merely encouraging patients to be more involved for decisions, using clinicians as a resource for 848–850 in decisions would not necessarily enhance information and support. satisfaction or lead to better outcomes. This Some definitions of shared decision making seem suggests that the attitudes and values underlying the to focus solely on information provision.851 This principles of shared decision making are perhaps follows a traditional biomedical perspective, more important than the procedural aspects. where collecting ideas, concerns and expectations from the patient aims to help the professional 5.2 Implementing shared make a better plan for the patient. There is a move away from this approach, towards more actively decision making engaging patients in their own care.852 However, while clinicians may believe that they implement Supporting partnership approaches shared decision making, the evidence does not Research suggests that in order for people to take always support this.853–857 This suggests that there is more responsibility for their health and treatment more work to do to help all parties understand the choices, they need to be equipped with information underlying purpose of shared decision making and and support to participate.865–868 People must not the most appropriate techniques to support this. only be involved in their health but must have influence over their care.869–871 While it may be easy to say that shared decision making should be more widely implemented, it is The evidence implies that there is significant important to be clear about what this means and overlap between the strategies required to increase to acknowledge the difficulties with this.858–861 It self-management and those needed to implement may also be crucial to recognise that true shared shared healthcare decisions. In particular, both decision making may not be what some patients require an integrated approach that supports want.862 The idea that responsibility for decisions professionals and patients to move towards a is a fixed entity that can be apportioned between new relationship characterised by collaboration, clinicians and patients is also problematic.863 information sharing, shared goals and an understanding that both parties have an active role to play in improving health outcomes.872–874

HELPING PEOPLE SHARE DECISION MAKING 35 A great deal of research has been published people.900–901 Yet, there may still be considerable about various strategies and tools to encourage work to do in this area.902–904 Interviews with shared decision making, sometimes with mixed GPs in 11 European countries found that most success.875–876 Thus the evidence suggests that rather GPs thought that involving people in healthcare than focusing on individual tools and techniques, a decisions had positive outcomes but GPs defined more fundamental change is needed in the culture patient involvement narrowly, thought it took place of care.877 solely during consultations and felt that they had limited time to engage with people.905 An implication from these studies is that changing the roles of clinicians and patients may have a Other studies have identified similar barriers. For significant impact on the extent to which shared instance, research in the UK suggests that clinicians decision making is accepted and demanded.878–882 may take a ‘compliance-orientated’ approach and Clinicians may need to shift from being ‘experts this is unlikely to be helpful.906 who care for and do to’ patients to ‘enablers who use their expertise to support people to experience This suggests that there may be work to do to optimum health’. Simultaneously, patients may educate clinicians about the value and scope of supporting shared decision making and the skills need to shift from being passive recipients of 907–913 care to taking responsibility for their health and they need to achieve this. care.883–884 The crucial point is that shared decision A number of strategies have been tested to making requires changes from both patients and improve clinician communication strategies and professionals, and this is more fundamental than help professionals support self-management and merely providing supportive information and tools. shared decision making.914–921 For instance, a Little research has explored the barriers and randomised trial found that training GPs about facilitators to fundamental culture change risk communication tools and shared decision regarding shared decision making. The extent making for people with long-term conditions could improve prescribing and was unlikely to have major to which the focus should be on policy makers, 922 professionals or patients in moving this agenda impacts on the cost of care in the UK. However, forward also remains uncertain. researchers in the UK also found that while GPs appear receptive to patient involvement, training in The role of family members in decision making is shared decision making and risk communication similarly unclear, but clinicians and researchers did not help them achieve this or improve patient are beginning to acknowledge this as an important outcomes.923 This suggests that knowledge is limited area of investigation.885–890 Few studies have about the best strategies to help clinicians support examined the concept of shared decision making shared decision making. when the patient is a child and those that do tend to focus on involving parents rather than children Supporting clinicians is not only about providing themselves.891 training. There may be some fundamental disincentives to address. Research suggests that professionals may be afraid of truly sharing Upskilling clinicians decisions and moving forward with something The attitudes and skills of healthcare professionals that a patient wants which may not be consistent influence the extent to which people feel engaged with the clinician’s ideal approach.924 This implies and supported. 892–895 In fact, the views and practices that greater clarity may be needed for health of professionals may be one of the most significant professionals about how to support shared decision facilitators or barriers to implementing shared making while also remaining confident about their decision making.896–899 practice. In light of research about professionals’ opinions and frustrations in this regard, regulators, If people are to be more involved in decisions about education providers and professional bodies may their care and more active in keeping themselves need to take a view about this issue, especially in well, clinicians may need to be able to communicate the context of an increasingly litigious culture. information effectively and to consider what level of involvement is appropriate for different

36 5.3 Impact of shared There are a wide range of initiatives to help people share in decision making. These could be decision making categorised along a continuum of interventions, with passive information provision at one end of How does shared decision the scale and training and support initiatives that making work? more actively seek to assist behaviour change and A major gap in knowledge is whether and how increase self-efficacy at the other end. It remains shared decision making works. Specific tools uncertain which strategies are most effective, alone and techniques may encourage patients and or in combination. their carers to take more responsibility for their Interventions to help people share in decision care, help people with long-term conditions feel making vary considerably in their aims, approach, more in control and improve the overall quality content, delivery, duration and target group. The of care by encouraging health professionals to conditions under which interventions work best follow recommended care protocols.925 But shared need further investigation. decision making is complex, both conceptually and in terms of implementation. People with different demographic and clinical characteristics may require varying approaches There is a need to explore in more depth the to support shared decision making, and certain impacts of shared decision making, rather than decisions may be more amendable than others.935–941 merely assuming positive outcomes. This review suggests that impacts on clinical outcomes and Despite these variations and caveats, principles that resource use are mixed and impacts on safety, have been found to work well to support shared timeliness and equity are virtually unknown. decision making include:942–946 There is also a need to better understand the – actively supporting people to be involved in conflicting and sometimes contradictory research decision making findings. The evidence for shared decision making – emphasising options and problem solving may be mixed in some cases because a wide range of things are described as ‘shared decision making’. – developing care plans as a partnership between Past reviews have tended to combine initiatives patients and professionals that focus solely on information provision with – setting goals and following up on the extent to interventions that more actively target behaviour which these are achieved over time change and self-efficacy. However, these varying interventions may have different outcomes so – using decision aids rather than merely passive combining them could dilute the findings. information provision – providing opportunities to share and learn Which strategies work best? from others. There is emerging evidence that helping people to share in decision making about their care The best strategies for implementing these can have benefits for people using services and principles remain uncertain.947 There is a need for their families, particularly in terms of patient high-quality research and evaluations that focus satisfaction.926–929 However, this review suggests on building relationships between patients and that the best strategies to support shared practitioners and exploring the most effective decision making remain uncertain. While a strategies for encouraging behaviour change.948–949 number of studies have found benefits from decision support tools, clinician and patient education and action plans, other similar research has not found favourable impacts.930–934

HELPING PEOPLE SHARE DECISION MAKING 37 This review has identified some evidence that the There is evidence that some patients want to following tools and techniques can encourage be more involved in decisions and that some shared decision making: practitioners also value this approach.963–967 There is also increasing evidence about the feasibility – decision aids of using tools such as decision aids, action plans, – action plans and goal setting and training and education of various types to encourage shared decision making in routine – training for patients clinical practice.968 Interventions to improve – training for professionals. shared decision making have been found to enhance knowledge, involvement in decisions and However, the evidence base suggests that while patient satisfaction and in some cases to improve they may have localised benefits, none of these adherence to treatment.969–972 However, good quality techniques alone are likely to be sustainable or evidence about other outcomes is lacking.973 more widely impactful in the long term. Instead, these strategies could be seen as pieces of a jigsaw, The wider impacts on clinical outcomes, safety and 974–975 which may work well together to form a more healthcare resource use remain uncertain. complete picture. While many studies, articles and policy and guidance papers assume that shared decision The review suggests that information provision making improves clinical outcomes and provides and patient-held records alone are unlikely to be value for money, little high-quality research has sufficient to motivate ongoing shared decision been undertaken to support this. making.950–951 The same could be said of decision support tools which, though worthwhile for some Numerous studies are ongoing or planned, but people, may have limited long-term impacts if these tend to focus on testing the value of decision used alone.952–954 Active support for both patients support tools or training on increasing involvement and professionals is needed to enable true in decisions. The actual impact of shared decisions partnerships.955 on patients’ physical wellbeing and on resource use within health and social care needs investigation. To really support change in shared decision making, a fundamental shift may be needed in A number of innovative strategies are being the way both patients and professionals view tested to support behaviour change in the UK. their roles.956–958 In this view, the culture and Rigorous evaluation of these programmes and wide infrastructure of the health services is as important dissemination of learning will enhance knowledge as the motivation and attitudes of patients and in this area considerably. professionals.959–961

Measuring outcomes There is more work to be done to understand the impact of shared decision making. A systematic review found that studies of decision support interventions apply widely varying outcome measures and instruments. Actual or preferred choice was the most common outcome measured and little attention was paid to clinical outcomes or health service use.962

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58 705 Joffe S, Manocchia M, 714 Rockenbauch K, 723 Belanger E, Rodriguez C, 732 O’Flynn N, Britten N. Does Weeks JC, Cleary PD. What Schildmann J. Shared Groleau D. Shared decision- the achievement of medical do patients value in their decision making (SDM): making in palliative care: identity limit the ability of hospital care? An empirical a systematic survey of a systematic mixed studies primary care practitioners perspective on autonomy terminology use and review using narrative to be patient-centred? centred bioethics. J Med concepts. Gesundheitswesen synthesis. Palliat Med A qualitative study. Ethics 2003;29(2):103-8. 2011;73(7):399-408. 2011;25(3):242-61. Patient Educ Couns 706 White MP, Cohrs JC, Göritz 715 Ernst J, Kuhnt S, Schwarzer 724 Buchi S, Straub S, Schwager 2006;60(1):49-56. AS. Dynamics of trust in A et al. The desire for U. 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HELPING PEOPLE SHARE DECISION MAKING 59 740 Charles C, Gafni A, Whelan 751 Towle A, Godolphin W, 760 Elit L, Charles C, Gold I et 771 Davis K, Haisfield L, T. Self-reported use of Grams G, Lamarre A. al. Women’s perceptions Dorfman C et al. Physicians’ shared decision-making Putting informed and about treatment decision attitudes about shared among breast cancer shared decision making making for ovarian decision making for prostate specialists and perceived into practice. Health Expect cancer. Gynecol Oncol cancer screening. Fam Med barriers and facilitators 2006;9(4):321-32. 2003;88(2):89-95. 2011;43(4):260-6. to implementing this 752 Légaré F, St-Jacques S, 761 Stevenson FA, Barry CA, 772 McGuire AL, McCullough approach. Health Expect Gagnon S et al. Prenatal Britten N et al. Doctor– LB, Weller SC, Whitney 2004;7(4):338-48. screening for Down patient communication SN. Missed expectations? 741 Silvia KA, Sepucha syndrome: a survey of about drugs: the evidence Physicians’ views of patients’ KR. Decision aids in willingness in women for shared decision making. participation in medical routine practice: lessons and family physicians to Soc Sci Med 2000;50:829-40. decision-making. Med Care from the breast cancer engage in shared decision- 762 Davis K, Haisfield L, 2005;43(5):466-70. initiative. Health Expect making. Prenat Diagn. Dorfman C et al. Physicians’ 773 Fillion E. How is medical 2006;9(3):255-64. 2011;31(4):319-26. attitudes about shared decision-making shared? 742 Silvia KA, Ozanne EM, 753 Towle A, Godolphin W, decision making for prostate The case of haemophilia Sepucha KR. Implementing Grams G, Lamarre A. cancer screening. Fam Med patients and doctors: breast cancer decision aids Putting informed and 2011;43(4):260-6. the aftermath of the in community sites: barriers shared decision making 763 Rockenbauch K, Geister infected blood affair in and resources. Health Expect into practice. Health Expect C, Appel C. Patient France. Health Expect 2008;11(1):46-53. 2006;9(4):321-32. involvement: the physician’s 2003;6(3):228-41. 743 Watson DB, Thomson RG, 754 Gravel K, Légaré F, Graham view - a qualitative survey. 774 Fiks AG, Localio AR, Murtagh MJ. Professional ID. Barriers and facilitators Psychother Psychosom Med Alessandrini EA et al. centred shared decision to implementing shared Psychol 2010;60(5):156-63. Shared decision-making making: patient decision decision-making in clinical 764 Shepherd HL, Tattersall in pediatrics: a national aids in practice in primary practice: a systematic review MH, Butow PN. Physician- perspective. Pediatrics care. BMC Health Serv Res of health professionals’ identified factors affecting 2010;126(2):306-14. 2008;8:5. perceptions. Implement Sci patient participation 775 Aoki N, Sakai M, Nakayama 744 Wirrman E, Askham J. 2006;1:16. in reaching treatment T et al. u-SHARE: web- Implementing patient 755 Légaré F, O’Connor AM, decisions. J Clin Oncol based decision support/ decision aids in urology. Graham ID et al. Impact 2008;26(10):1724-31. risk communication tool Oxford: Picker Institute of the Ottawa Decision 765 Watson DB, Thomson RG, for healthcare consumers Europe, 2006. Support Framework on Murtagh MJ. Professional with unruptured 745 Rockenbauch K, Geister the agreement and the centred shared decision intracranial aneurysms. C, Appel C. Patient difference between patients’ making: patient decision Stud Health Technol Inform involvement: the physician’s and physicians’ decisional aids in practice in primary 2007;129(2):1012-6. view – a qualitative survey. conflict. Med Decis Making care. 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60 780 Légaré F, Ratte S, Gravel K, 789 Naik AD, Schulman- 798 Belcher VN, Fried TR, 808 Moreau A, Carol L, Graham ID. Barriers and Green D, McCorkle R Agostini JV, Tinetti ME. Dedianne MC et al. facilitators to implementing et al. Will older persons Views of older adults on What perceptions do shared decision-making in and their clinicians use a patient participation in patients have of decision clinical practice: update of a shared decision-making medication-related decision making (DM)? Toward an systematic review of health instrument? J Gen Intern making. J Gen Intern Med integrative patient-centered professionals’ perceptions. Med 2005;20(7):640-3. 2006;21(4):298-303. care model. A qualitative Patient Educ Couns 790 Edwards A, Elwyn G, 799 Stacey D, Légaré F, Pouliot study using focus-group 2008;73(3):526-35. Wood F et al. Shared S et al. Shared decision interviews. 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Patient Educ Couns 803 Watson DB, Thomson RG, the business of sharing 785 Young HN, Bell RA, Epstein 2004;53(2):121-8. Murtagh MJ. Professional treatment decisions is not RM et al. Physicians’ 794 Elwyn G, Edwards A, centred shared decision the same as shared decision shared decision-making Wensing M et al. Shared making: patient decision making: A discourse behaviors in depression decision making observed aids in practice in primary analysis of decision sharing care. Arch Intern Med in clinical practice: visual care. BMC Health Serv Res in general practice. Health 2008;168(13):1404-8. displays of communication 2008;8:5. 2011;15(1):78-95. 786 Schneider HB, Sandholzer sequence and patterns. 804 Wirrman E, Askham J. 813 Walter FM, Emery JD, H. Shared decision J Eval Clin Pract Implementing patient Rogers M, Britten N. making: evaluation of 2001;7(2):211-21. decision aids in urology. Women’s views of optimal German medical students’ 795 Holmes-Rovner M, Oxford: Picker Institute risk communication and preferences. J Eval Clin Valade D, Orlowski C et Europe, 2006. decision making in general practice consultations Pract 2008;14(3):435-8. al. Implementing shared 805 Rosén P, Anell A, Hjortsberg decision-making in routine about the menopause and 787 Watson DB, Thomson RG, C. Patient views on choice hormone replacement Murtagh MJ. Professional practice: barriers and and participation in primary opportunities. Health Expect therapy. Patient Educ Couns centred shared decision health care. Health Policy 2004;53(2):121-8. making: patient decision 2000;3(3):182-91. 2001;55(2):121-8. 814 Elwyn G, Edwards A, aids in practice in primary 796 Shin DW, Park JH, Shim 806 Grabauskas V, Peicius E, care. BMC Health Serv Res EJ, Hahm MI, Park JH, Wensing M et al. Shared Kaminskas R. The patient decision making observed 2008;8:5. Park EC. 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No decision McKenzie S, Harris Kasper J. Investigating a Understanding of Quality about me, without me. M. ‘Managing patient training supporting shared Improvement in Europe London: King’s Fund, 2011. involvement’: provider decision making (IT’S SDM (DUQuE)’ project. BMC Health Serv Res 2010;10:281. 818 Kvåle K, Bondevik M. perspectives on diabetes 2011): study protocol for a What is important for decision-making. Health randomized controlled trial. 843 Elwyn G, Edwards A. Shared patient centred care? A Expect (Published online Trials 2011;12(1):232. decision-making in health qualitative study about the June 2011). 835 van der Weijden T, Légaré care: Achieving evidence- perceptions of patients with 827 Salzburg Global Seminar. F, Boivin A et al. How to based patient choice. 2nd ed. cancer. Scand J Caring Sci The Salzburg Statement on integrate individual patient Oxford: Oxford University 2008;22(4):582-9. Shared Decision Making. values and preferences in Press, 2009. 819 Charalambous A, BMJ 2011;342:d1745. www. clinical practice guidelines? 844 Moumjid N, Gafni A, Papadopoulos IR, bmj.com/content/342/bmj. A research protocol. Brémond A, Carrère MO. Beadsmoore A. Listening d1745.full Implement Sci 2010;5:10. Shared decision making to the voices of patients 828 Giguere A, Légaré F, Grad 836 Leon-Carlyle M, Spiegle G, in the medical encounter: with cancer, their R et al. Developing and Schmocker S et al. Using are we all talking about advocates and their user-testing Decision boxes patient and physician the same thing? Med Decis nurses: A hermeneutic- to facilitate shared decision perspectives to develop a Making 2007;27(5):539-46. phenomenological study making in primary care shared decision-making 845 Makoul G, Clayman ML. An of quality nursing care. – a study protocol. BMC framework for colorectal integrative model of shared Eur J Oncol Nurs Med Inform Decis Mak cancer. Implement Sci decision making in medical 2008;12(5):436-42. 2011;11:17. 2009;4:81. encounters. Patient Educ 820 Murray E, Pollack L, 829 Bozic KJ, Chiu V. Emerging 837 Légaré F, Stewart M, Frosch Couns 2006;60(3):301-12. White M, Lo B. Clinical ideas: Shared decision D et al. EXACKTE(2): 846 Matlock DD, Nowels decision-making: Patients’ making in patients with exploiting the clinical CT, Masoudi FA, Sauer preferences and experiences. osteoarthritis of the hip and consultation as a knowledge WH, Bekelman DB, Patient Educ Couns knee. Clin Orthop Relat Res transfer and exchange Main DS, Kutner JS. 2007;65(2):189-96. 2011;469(7):2081-5. environment: a study Patient and cardiologist 821 Heesen C, Kasper J, Segal 830 Mann E, Prevost AT, protocol. Implement Sci perceptions on decision J et al. Decisional role Griffin S et al. Impact of an 2009;4:14. making for implantable preferences, risk knowledge informed choice invitation 838 Müller-Engelmann M, cardioverter-defibrillators: and information interests on uptake of screening for Krones T, Keller H, Donner- a qualitative study. in patients with multiple diabetes in primary care Banzhoff N. Decision Pacing Clin Electrophysiol sclerosis. Mult Scler (DICISION): trial protocol. making preferences in 2011;34(12):1634-44. 2004;10(6):643-50. BMC Public Health 2009 the medical encounter – a 847 Rockenbauch K, 822 McKeown RE, Reininger 20;9:63. factorial survey design. Schildmann J. Shared BM, Martin M, Hoppmann 831 Légaré F, Labrecque M, BMC Health Serv Res decision making (SDM): RA. Shared decision Godin G et al. Training 2008;8:260. a systematic survey of making: views of first-year family physicians and 839 Desroches S, Gagnon terminology use and residents and clinic residents in family medicine MP, Tapp S, Légaré F. concepts. Gesundheitswesen patients. 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Dynamics of trust in 2007;129(2):1012-6. in the medical encounter: 2004;7(3):235-45. medical decision making: an 876 Krist AH, Woolf SH, are we all talking about 860 Hamann J, Mendel R, experimental investigation Johnson RE, Kerns JW. the same thing? Med Decis Bühner M et al. How should into underlying processes. Patient education on Making 2007;27(5):539-46. patients behave to facilitate Med Decis Making prostate cancer screening 852 Coulter A, Collins A. shared decision making – 2011;31(5):710-20. and involvement in decision Making shared decision- the doctors’ view. Health 869 McGeoch GR, making. Ann Fam Med making a reality. No decision Expect (Published online Willsman KJ, Dowson CA 2007;5(2):112-9. about me, without me. May 2011). et al. Self management 877 Rockenbauch K, Geister London: King’s Fund, 2011. 861 Portnoy DB, Han plans in the primary care C, Appel C. 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When 2009;46(3):270-5. 2006;9(4):321-32. Main DS, Kutner JS. the business of sharing 872 Gravel K, Légaré F, Graham 880 Gravel K, Légaré F, Graham Patient and cardiologist treatment decisions is not ID. Barriers and facilitators ID. Barriers and facilitators perceptions on decision the same as shared decision to implementing shared to implementing shared making for implantable making: A discourse decision-making in clinical decision-making in clinical cardioverter-defibrillators: analysis of decision sharing practice: a systematic review practice: a systematic review a qualitative study. in general practice. Health of health professionals’ of health professionals’ Pacing Clin Electrophysiol 2011;15(1):78-95. perceptions. Implement Sci perceptions. Implement Sci 2011;34(12):1634-44. 864 Mendick N, Young B, 2006;1:16. 2006;1:16. 856 Charles C, Gafni A, Whelan Holcombe C, Salmon P. 873 Légaré F, O’Connor AM, 881 Légaré F, O’Connor AM, T. 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66 Appendix 1 Review methods

Methodology To be eligible for inclusion, studies had to be: This is a sister publication to the Health – empirical research or reviews Foundation’s Helping people help themselves review – focused on the effects of shared decision making of research about supporting self-management or strategies to improve shared decision making published in 2010.976 – published or readily accessible To compile evidence for this rapid review, two reviewers independently searched bibliographic – available in abstract, journal article, or full databases, reference lists of identified articles and report form. the websites of relevant agencies. There were no language restrictions. The databases included Medline, Embase, ERIC, Science Citation Index, Cochrane Database Unpublished research and evaluations from the of Systematic Reviews, Cochrane Controlled Health Foundation were excluded from the review. Trials Register, DARE, NHS Health Technology More than 40,000 pieces of potentially relevant Assessment and Economic Assessment databases, research were scanned. Those that were most NHS Research Register, NHS Evidence, US relevant were examined in detail. No formal quality National Electronic Library for Health, PsychLit, weighting was undertaken, but systematic reviews, the WHO Library, Agency for Healthcare Research randomised trials and large observational studies and Quality, Web of Knowledge, Web of Science, were prioritised. Where such studies were not Google Scholar and the Health Management available, other research was included. Information Consortium. Data were extracted from all relevant publications All databases were searched from 2000 until mid- using a structured template and studies were November 2011 using combinations of words, grouped according to key questions and outcomes mesh terms and similes such as shared decision to provide a narrative summary of trends. making, patient–provider communication, patient empowerment, involvement, decision aids, family In total, 465 studies of relevance were included in conferences, decisions, self-care, self-efficacy, self- the synthesis. In addition, descriptive material was help, self-treatment, self-monitoring, long-term used to provide context. conditions, chronic care, coping skills, behaviour change, care plans and patient-held records.

HELPING PEOPLE SHARE DECISION MAKING 67 Review limitations There is a lack of evidence about the strengths and weaknesses of various approaches and about the When interpreting the findings in this report it implications of using them in routine practice. is important to understand that the review is not This lack of evidence does not mean that specific exhaustive. It compiles key trends and presents approaches are ineffective or unhelpful, just that examples of relevant research available at a certain little research is available about them. point in time (November 2011), but does not purport to represent every study published about In most cases there is limited detail within research shared decision making. reports about how interventions were implemented. This means that it is difficult to differentiate the The focus is on empirical research. Internal most effective components or strategies, or outline evaluations, narratives and descriptive overviews the mechanisms by which supporting shared are not included when describing impacts. Articles decision making may work. may have theorised about the importance of shared decision making and potential facilitators and The review examined interventions that have been challenges, but these were not eligible for inclusion tested to support shared decision making but the unless they contained empirical material. conclusions we can draw are limited due to a lack of comparative evidence. Studies tend to describe Interventions to support shared decision making the benefits of one particular initiative, but not vary considerably in their aims, approach, to compare various approaches. This makes it content, delivery, duration and target group. The difficult to compare the relative effectiveness or way shared decision making is defined may also appropriateness of varying approaches. differ. Therefore it would be misleading to refer to initiatives to help people share in decisions as an A lack of evidence or comparisons does not integrated whole. necessarily mean that there is no relationship or benefit, just that there is currently insufficient Much of the available evidence is sourced from research to draw conclusions. countries with very different healthcare economies and styles of working than the UK so may not be Conclusions are further limited because most directly comparable. studies have some methodological difficulties such as being observational, small scale and based at single sites.

68 THE HEALTH FOUNDATION Stay informed The Health Foundation works to continuously improve the quality of healthcare in the UK. If you would like to stay up to date with our work and activities, please sign up for our email newsletter at: www.health.org.uk/enewsletter You can also follow us on Twitter at: www.twitter.com/HealthFdn The Health Foundation is an independent charity working to continuously improve the quality of healthcare in the UK. We want the UK to have a healthcare system of the highest possible quality – safe, effective, person centred, timely, efficient and equitable. We believe that in order to achieve this, health services need to continually improve the way they work. We are here to inspire and create the space for people to make lasting improvements to health services. Working at every level of the system, we aim to develop the technical skills, leadership, capacity and knowledge, and build the will for change, to secure lasting improvements to healthcare.

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