Patient and public involvement in a UK National Institute for Health Research Programme Grant for Applied Research: Experiences from the Chronic Headache Education and Self-management Study (CHESS)

Vivien Nichols, Gemma Pearce, David Ellard, Simon Evans, Kirstie L Haywood, Chloe Norman, Rachel Potter, Harbinder K. Sandhu, Kimberley Stewart, Martin Underwood, Shilpa Patel

Research output: Contribution to journalArticlepeer-review

4 Citations (Scopus)
38 Downloads (Pure)

Abstract

Background: Patient and public involvement (PPI) plays a crucial role in ensuring research is carried out in conjunction with the people that it will impact upon. In this article, we present our experiences and reflections from working collaboratively with patients and public through the lifetime of an National Institute for Health Research (NIHR) programme grant; the Chronic Headache Education and Self-management Study (CHESS) which took place between 2015 and 2020. PPI over the course of CHESS: We worked closely with three leading UK migraine charities and a lay advisory group throughout the programme. We followed NIHR standards and used the Guidance for Reporting Involvement of Patients and the Public checklist. We consulted our PPI contacts using a variety of methods depending on the phase of the study and the nature of the request. This included emails, discussions, and face-to-face contact. PPI members contributed throughout the study in the programme development, in the grant application, ethics documentation, and trial oversight. During the feasibility study; in supporting the development of a classification interview for chronic headache by participating in a headache classification conference, assessing the relevance, and acceptability of patient-reported outcome measures by helping to analyse cognitive interview data, and testing the smartphone application making suggestions on how best to present the summary of data collected for participants. Due to PPI contribution, the content and duration of the study intervention were adapted and a Delphi study with consensus meeting developed a core outcome set for migraine studies. Conclusions: The involvement of the public and patients in CHESS has allowed us to shape its overall design, intervention development, and establish a core outcome set for future migraine studies. We have reflected on many learning points for the future application of PPI.

Original languageEnglish
Article numberE72
JournalPrimary Health Care Research and Development
Volume22
Early online date19 Nov 2021
DOIs
Publication statusPublished - 19 Nov 2021

Funder

Funding Information: This research was funded by the National Institute for Health Research (NIHR) - Programme Grants for Applied Research (project number: RP-PG-1212-20018). Trial registration: ISRCTN79708100. Registered 16th December 2015.

Keywords

  • chronic headache
  • experience
  • patient and public involvement
  • primary care
  • self-management

ASJC Scopus subject areas

  • Public Health, Environmental and Occupational Health
  • Care Planning

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