Embedding patient and public involvement: managing tacit and explicit expectations

Fiona Poland, Georgina Charlesworth, Phuong Leung, Linda Birt

Research output: Contribution to journalArticle

11 Citations (Scopus)
9 Downloads (Pure)

Abstract

Background: Evidencing well-planned and implemented patient and public involvement (PPI) in a research project is increasingly required in funding bids and dissemination activities. There is a tacit expectation that involving people with experience of the condition under study will improve the integrity and quality of the research. This expectation remains largely unproblematised and unchallenged.
Objective: To critically evaluate the implementation of PPI activity, including co-research in a programme of research exploring ways to enhance the independence of people with dementia.
Design: Using critical cases we make visible and explicate theoretical and moral challenges of PPI.
Results: Case 1 explores the challenges of undertaking multiple PPI roles in the same study making explicit different responsibilities of being a co-applicant, PPI advisory member and a co-researcher. Case 2 explores tensions which arose when working with carer co-researchers during data collection; here the co-researcher’s wish to offer support and advice to research participants, a moral imperative, was in conflict with assumptions about the role of the objective interviewer. Case 3 defines and examines co-research data coding and interpretation activities undertaken with people with dementia; reporting the theoretical outputs of the activity and questioning whether this was co-researcher analysis or PPI validation.
Conclusion: PPI activity can empower individual PPI volunteers and improve relevance and quality of research but it is a complex activity which is socially constructed in flexible ways with variable outcomes. It cannot be assumed to be simple or universal panacea for increasing the relevance and accessibility of research to the public.
Original languageEnglish
Pages (from-to)1231-1239
Number of pages9
JournalHealth Expectations
Volume22
Issue number6
Early online date20 Sep 2019
DOIs
Publication statusPublished - Dec 2019

Keywords

  • patient and public involvement
  • Dementia
  • Co-research
  • constructionist
  • peer-research
  • co-applicant

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