1. Clarifying the roles of patients in research
- Author
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Kate Boddy, Nicky Britten, Emma Cockcroft, Helen Burchmore, and Kristin Liabo
- Subjects
Value (ethics) ,medicine.medical_specialty ,Biomedical Research ,Research Subjects ,Physical Therapy, Sports Therapy and Rehabilitation ,Sports Medicine ,law.invention ,03 medical and health sciences ,0302 clinical medicine ,Nursing ,law ,Terminology as Topic ,Health care ,medicine ,Humans ,Orthopedics and Sports Medicine ,030212 general & internal medicine ,Patient participation ,Qualitative Research ,Ethical code ,business.industry ,030503 health policy & services ,030229 sport sciences ,General Medicine ,Patient Rights ,General partnership ,CLARITY ,Outcomes research ,Patient Participation ,0305 other medical science ,Psychology ,business ,Construct (philosophy) ,Qualitative research - Abstract
The term ‘patient’ no longer denotes a passive recipient of healthcare. Patients have demanded, and are increasingly given, the opportunity to influence health services and policies.1 Similarly, in health research patients are sought as partners in study design and governance.2 This is reflected in The BMJ ’s patient partnership initiative (www.bmj.com/campaign/patient-partnership),3 the Patient-Centred Outcomes Research Institute (PCORI) in the US,4 and the National Institute for Health Research (NIHR) in the UK.5 Because of the history of (un)ethical conduct in research, including patients as partners in research studies requires clarity about what the role includes. Patients’ roles must be defined so that we achieve meaningful patient partnership and well conducted, ethical research. ‘The patient’ is a construct that assumes an inherent imbalance of power and includes expectations of compliance by those inhabiting it.6 That it has taken so long to acknowledge the value patients bring to healthcare and research emphasises just how difficult it can be to broaden their role beyond passively receiving treatment. Many …
- Published
- 2019