Embedding patient and public involvement: managing tacit and explicit expectations

Poland, Fiona ORCID: https://orcid.org/0000-0003-0003-6911, Charlesworth, Georgina, Leung, Phuong and Birt, Linda (2019) Embedding patient and public involvement: managing tacit and explicit expectations. Health Expectations, 22 (6). pp. 1231-1239. ISSN 1369-6513

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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.

Item Type: Article
Uncontrolled Keywords: patient and public involvement,dementia,co-research,constructionist,peer-research,co-applicant
Faculty \ School: Faculty of Medicine and Health Sciences > School of Health Sciences
UEA Research Groups: Faculty of Medicine and Health Sciences > Research Groups > Dementia & Complexity in Later Life
Faculty of Medicine and Health Sciences > Research Centres > Institute for Volunteering Research
Depositing User: LivePure Connector
Date Deposited: 02 Aug 2019 13:30
Last Modified: 20 Apr 2023 07:37
URI: https://ueaeprints.uea.ac.uk/id/eprint/71871
DOI: 10.1111/hex.12952


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