Patient–Physician Collaboration in Rheumatology: a Necessity
Total Page：16
File Type：pdf, Size：1020Kb
Miscellaneous RMD Open: first published as 10.1136/rmdopen-2017-000499 on 18 July 2017. Downloaded from VIEWPOINT Patient–physician collaboration in rheumatology: a necessity Elena Nikiphorou,1,2 Alessia Alunno,3 Loreto Carmona,4 Marios Kouloumas,5 Johannes Bijlsma,6 Maurizio Cutolo7 To cite: Nikiphorou E, ABSTRACT has set important milestones and allowed the Alunno A, Carmona L, Over the past few decades, there has been significant specialty to progress to a different level. et al. Patient–physician and impressive progress in the understanding and collaboration in rheumatology: management of rheumatic diseases. One of the key a necessity. RMD Open reasons for succeeding in making this progress has PATIENTS AND PHYSICIANS WORKING IN 2017;3:e000499. doi:10.1136/ rmdopen-2017-000499 been the increasingly stronger partnership between PARTNERSHIP physicians and patients, setting a milestone in patient The relationship between patients and care. In this viewpoint, we discuss the recent evolution physicians has received attention since the ► Prepublication history for of the physician–patient relationship over time in Europe, Hippocratic times.1 It is undoubtedly a rela- this paper is available online. reflecting on the ‘journey’ from behind the clinic walls To view these files please visit tionship that has changed and matured through to clinical and research collaborations at national the journal online (http:// dx. doi. and international level and the birth of healthcare through the years, with almost a complete org/ 10. 1136/ rmdopen- 2017- turnaround of role and attitude: the emphasis 000499). professional and ‘rheumatic’ patient organisations. The role of expert patients and patient advocates in clinical is now on the patient talking and the physi- Received 16 May 2017 and scientific committees now represents a core part cian listening and understanding the needs of Revised 13 June 2017 of the decision-making process. In more recent years the patient; the physician giving opinion and Accepted 14 June 2017 and following the recognition that the young patients, information and the patient making choice physicians and academics have a voice and needs of their together with the physician; the patient asking own, including the need to be educated and instructed, and the physician answering. The communi- has encouraged the establishment of youth organisations, cation between physicians and patients in the enabling change and innovation to take place at a uniquely different level. majority of the communities has progressively http://rmdopen.bmj.com/ evolved into an open dialogue, transforming patients from passive recipients of informa- Rheumatology has witnessed rapid advances tion and instructions to active participants in over time; from more than 100 years back the management of their disease. The shift 1Academic Rheumatology when aspirin was ‘the’ treatment, through towards more patient-centred healthcare Department, King’s College to the mid-20th century when the effects has necessitated important changes in the London, London, UK of cortisone were first observed, to current infrastructure and the way healthcare is deliv- 2Rheumatology Department, times, where biological agents and small ered. This is, not surprisingly, more suited on September 25, 2021 by guest. Protected copyright. Whittington Hospital NHS Trust, molecules are catching headlines in the news. London, UK and more appealing to our target popu- 3Department of Medicine, But would such progress have been made lation of patients with chronic, rheumatic Rheumatology Unit,University of without interested clinicians and researchers musculoskeletal diseases (RMDs) often in the Perugia, Italy dedicating their lives to understanding mech- setting of many other coexisting (comorbid) 4 Instituto de Salud anistic pathways and therapeutic targets? conditions. Interestingly in the most recent Musculoesqueletica, Madrid, More importantly, would this have been Spain treatment guidelines for RMDs released by 5Cyprus League Against achieved without determined patients who the European League Against Rheumatism Rheumatism, Aglantzia, Cyprus believed, trusted and accepted treatments (EULAR), one of the overarching princi- 6Department of Rheumatology given to them? The answer is probably no. ples is that treatment should be based on a and Clinical Immunology, Scientific intelligence and the increasingly shared-decision process between the patient University Medical Center, stronger partnership between physicians and 2 3 Utrecht, The Netherlands and the physician. Patient empowerment 7Division of Clinical patients over time have undoubtedly played through tailored education and information Rheumatology,Department of a crucial role in better understanding rheu- becomes therefore a crucial aspect of health- Internal Medicine, University of matic and musculoskeletal diseases (RMDs) care, which we strongly advocate. However, Genoa, Genoa, Italy and their treatment. The congregation of we recognise that although clinicians and Correspondence to physicians, on the one hand, and patients, on health professionals are advised to educate Dr Elena Nikiphorou; the other, working together in partnership as patients and support them with informa- enikiphorou@ gmail. com a single unit rather than as different entities, tion about their disease, they have limited Nikiphorou E, et al. RMD Open 2017;3:e000499. doi:10.1136/rmdopen-2017-000499 1 RMD Open RMD Open: first published as 10.1136/rmdopen-2017-000499 on 18 July 2017. Downloaded from guidance about how to do this and to communicate the important aspects of disease may be of greater relevance evidence-based medicine in a way patients will under- to the patient when it comes to whether treatment has stand. In this aspect, and in close collaboration between succeeded or failed: for example, improved sleep, ability physicians and patients, the EULAR set of recommen- to remain socially engaged and in employment may be dations for education of patients with inflammatory what disease remission and treatment success means to arthritis4 are well-received, as are recent discussions them.8–13 focusing on translating all recommendations in a friendly We therefore observe with delight that regulatory patient language. We should not forget that communi- authorities require the patient perspective to be taken cation between patients and doctors is critical not just into account. Aside from the inclusion of patient-re- in clinical practice, but also in clinical research. In fact, ported outcomes in trials, the introduction of the the two are deeply linked as one informs the other, espe- patient’s voice in the evaluation of medicines and the cially as there is evidence that the patient and physician patient’s contribution in the assessment of benefit and perspectives diverge. For instance, in the development risk of therapeutic approaches is required.14 15 Of all of the Rheumatoid Arthritis Impact of Disease (RAID) stakeholders, regulators are the ones most interested index, patients considered that ‘coping’ needed to be in patients being educated in the process of drug devel- taken into account and doctors were not so in favour of opment and applaud and support initiatives such as the this. The psychometric properties of the RAID, which European Patients Academy (http://www.eupati. eu) and includes ‘coping’, are better than other doctor-derived initiatives that focus on bringing the patient closer to indices more widely used, for example, the 28-joint the centre of medicines development, authorisation and count Disease Activity Score (DAS28).5 Some groups reimbursement processes in the European Union (EU). even consider that probably the best strategy to achieve Finally, we recognise that this evolution in the physician– a comprehensive and valid definition of states in disease patient relationship has bridged many gaps between the will be to concur in the same group of people experi- two parties, prompting patient and physician groups ences and technical expertise, that is, recruiting doctors to come together and work collaboratively towards with RMDs to ‘translate’ the experience to doctors.6 achieving common goals, and strengthening research in Outcomes Measures in Rheumatology (OMERACT) rheumatology. is a forum in which patient–researcher relationship is incredibly enriching (https://www. omeract. org/ patient_ research_ partners. php). OMERACT is an inde- THE BIRTH OF HEALTHCARE PROFESSIONAL/PHYSICIAN pendent international think-tank and hands-on focused ORGANISATIONS on outcome measures in rheumatology. The group, a The first attempt to establish a worldwide group for the mix of stakeholders, from doctors, researchers, agen- study and control of rheumatic diseases dates back to http://rmdopen.bmj.com/ cies, industry and patients, meets every 2 years and works 1913 but it sadly failed due to World War I intervening. on agreed processes and projects between meetings. In 1925 the International League Against Rheumatism Recognising that nobody knows how arthritis changes (ILAR) was formed in Paris representing the first step one’s life better than the people who have the condition, towards the development of regional leagues, namely OMERACT has Patient Research Partners fully inte- Pan-American League of Rheumatology Associations grated into each stage of the OMERACT process. The (PANLAR) in the Pan-American Region in 1943, EULAR majority of the most influential patient representatives in the European region in 1947, the Asia Pacific League in rheumatology