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Reader Response: Achieving effective patient and public involvement in international clinical trials in neurology

  • Kristin Liabo, Senior Research Fellow, NIHR Applied Research Collaboration (ARC) South West Peninsula, University of Exeter Medical School, Exeter, UK
  • Emma Cockcroft, Research Fellow, NIHR Applied Research Collaboration (ARC) South West Peninsula, University of Exeter Medical School, Exeter, UK
Submitted November 16, 2020

Thank you for describing PPI in your international RCT.1 Your description of the pre-funding process indicates that the DELIVER-MS study was developed “with or by members of the public rather than to, or for them.”2 We have some concerns about the terminology used elsewhere in your paper, which may add to the frequent conflation between PPI and qualitative research.3 Why does this matter?

Qualitative research requires ethical approval to collect data, for example through focus group interviews. PPI does not require ethical approval because patients’ views are advice, not data. Within PPI, patients contribute to discussions about how to conduct the research. Thematic analysis of patients’ views is a qualitative research method. Using this in PPI risks overlooking individual contributions which might be more pertinent to the research design than a general theme of ideas. Importantly, within PPI, researchers and patients elaborate on decisions, so that the end design is bigger than the individual contributions. It is difficult to imagine impactful PPI without this joint deliberation.

We believe it is important to make this distinction, and researchers wanting to replicate your methods should carefully consider their methods and language used when describing PPI.

Disclosure

The author reports no relevant disclosures. Contact journal@neurology.org for full disclosures.  

​References

  1. Tallantyre EC, Evangelou N, Bale C, et al. Achieving effective patient and public involvement in international clinical trials in neurology. Neurology Clinical Practice Epub 2019 Sept 26.
  1. Hayes H, Buckland S, Tarpey M. INVOLVE (2012) Briefing notes for researchers: involving the public in NHS, public health and social care research. Available at: http://www.invo.org.uk/wp-content/uploads/2012/04/INVOLVEBriefingNotesApr2012.pdf. Accessed November 16, 2020.
  1. Liabo K, Boddy K, Burchmore H, Cockcroft E, Britten N. Clarifying the roles of patients in research. BMJ 2018;361:k1463.

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Neurology: Clinical Practice: 13 (4)

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Neurology: Clinical Practice |  Print ISSN: 2163-0402
Online ISSN: 2163-0933

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