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Editorials

Clarifying the roles of patients in research

BMJ 2018; 361 doi: https://doi.org/10.1136/bmj.k1463 (Published 10 April 2018) Cite this as: BMJ 2018;361:k1463
  1. Kristin Liabo, senior research fellow1,
  2. Kate Boddy, research fellow1,
  3. Helen Burchmore, research clinic coordinator2,
  4. Emma Cockcroft, associate research fellow1,
  5. Nicky Britten, professor1
  1. 1NIHR Collaboration for Leadership in Applied Health Research and Care South West Peninsula (PenCLAHRC), University of Exeter Medical School, Exeter, UK
  2. 2AccEPT Clinic, Mood Disorders Centre, University of Exeter, Exeter, UK
  1. Correspondence to: K Liabo k.liabo{at}exeter.ac.uk

Common misunderstandings are a barrier to real progress

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 …

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