Intended for healthcare professionals

Feature Christmas 2020: Dr Who?

Inspired by chance: valuing patients’ informal contributions to research

BMJ 2020; 371 doi: https://doi.org/10.1136/bmj.m4478 (Published 14 December 2020) Cite this as: BMJ 2020;371:m4478
  1. Sebastian Crutch, professor of neuropsychology1,
  2. Daniel Herron, head of research innovation2,
  3. James Pickett, head of research3,
  4. Simon Rosser, solicitor4,
  5. Martin Rossor, national director for dementia research12
  6. on behalf of the Created Out of Mind team
  1. 1Dementia Research Centre, UCL Queen Square Institute of Neurology, University College London, London, UK
  2. 2NIHR UCLH Biomedical Research Centre, London, UK
  3. 3 Alzheimer’s Society, London, UK
  4. 4Rare Dementia Support, London, UK
  1. Correspondence to: S Crutch s.crutch{at}ucl.ac.uk

Serendipitous contributions from patients that influence the research agenda should be better recognised and acknowledged, argue Sebastian Crutch and colleagues

Public involvement is increasingly considered a required part of health research. Typically defined as research being carried out “with” or “by” members of the public rather than “to,” “about,” or “for” them,1 public involvement is different from engagement (provision and dissemination of information and knowledge about research) and participation (taking part in a research study). Typical activities include identifying research priorities,2 choosing and co-designing outcome measures,3 advisory group membership, reviewing research materials, and carrying out the research.

Several major journals and funders have adopted strategies for enabling patients and the public to shape their aims and ways of working. Some also require researchers to make explicit statements about how—and importantly when—that involvement in the research process has occurred (eg, The BMJ’s patient and public partnership campaign4). Other recent steps to improve standard practice include guidelines for researchers and the public,56 the development of public involvement standards,7 and suggested reporting guidelines (GRIPP2) for public involvement in research.8 These changes sit within a broader landscape of calls for greater involvement of patients and the public in scientific conferences,9 and autonomous patient-led movements to lead and crowdfund research,1011 and innovate systems of care and support.12

A plethora of involvement frameworks have been developed.13 However, formal frameworks may not always capture the richness and variety of informal contributions to research that occur serendipitously, retrospectively, or independently. These informal contributions may originate in everyday conversations and interactions between researchers and people living with health conditions, including those with cognitive impairments that may make formal meetings and documents less appropriate.

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