Intended for healthcare professionals


Patients’ roles and rights in research

BMJ 2018; 362 doi: (Published 25 July 2018) Cite this as: BMJ 2018;362:k3193
  1. Paul Wicks, vice president of patient innovation1,
  2. Tessa Richards, patient partnership editor2,
  3. Simon Denegri, NIHR national director for patients, carers and the public3,
  4. Fiona Godlee, editor in chief2
  1. 1PatientsLikeMe, Cambridge, MA, USA
  2. 2The BMJ, London UK
  3. 3National Institute for Health Research, London UK
  4. Correspondence to: P Wicks

Full partnership with patients is essential to any modern research enterprise

Patient and public involvement in research is becoming a mainstream activity thanks to recognition by everyone in the research process from funders and regulators to conference organisers and publishers that it helps them do a better job. There is certainly a strong case for increasing the value to patients and the public from the billions spent on biomedical research. The exponential rise in research output has seen a decline in quality1 and mounting concern about high levels of waste, bias, inefficiency, and error.2 A collaborative effort is needed to reform the research enterprise, and patients and the public have a leading part to play.3

Including patients and the public as partners in research is accepted best practice in several Western countries, and some funders make it mandatory. The BMJ supports this by requiring authors to report the extent of patient and public involvement in all submitted research.4 It is clear, however, that some researchers struggle to differentiate between qualitative research (when patients’ experiences are sought and used as data) and including patients as true research partners (when their …

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