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Clarifying the roles of patients in research
  1. Kristin Liabo1,
  2. Kate Boddy1,
  3. Helen Burchmore2,
  4. Emma Cockcroft1,
  5. Nicky Britten1
  1. 1 NIHR Collaboration for Leadership in Applied Health Research and Care South West Peninsula (PenCLAHRC), University of Exeter Medical School, Exeter, UK
  2. 2 AccEPT Clinic, Mood Disorders Centre, University of Exeter, Exeter, UK
  1. Correspondence to Kristin Liabo, NIHR Collaboration for Leadership in Applied Health Research and Care South West Peninsula (PenCLAHRC), University of Exeter Medical School, Exeter, UK; k.liabo{at}exeter.ac.uk

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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 …

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Footnotes

  • Competing interests We have read and understood BMJ policy on declaration of interests and have no relevant interests to declare. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR, or the Department of Health and Social Care.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Republishing This article was first published in The BMJ. Cite this article as: BMJ 2018;361:k1463

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