Poland, F;
Charlesworth, G;
Leung, P;
Birt, L;
(2019)
Embedding patient and public involvement: Managing tacit and explicit expectations.
Health Expectations
10.1111/hex.12952.
(In press).
Preview |
Text
Charlesworth_Embedding patient and public involvement. Managing tacit and explicit expectations_AOP.pdf - Published Version Download (630kB) | Preview |
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 unproblematized 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: Patient and public involvement 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.
| Type: | Article |
|---|---|
| Title: | Embedding patient and public involvement: Managing tacit and explicit expectations |
| Location: | England |
| Open access status: | An open access version is available from UCL Discovery |
| DOI: | 10.1111/hex.12952 |
| Publisher version: | https://doi.org/10.1111/hex.12952 |
| Language: | English |
| Additional information: | This work is licensed under a Creative Commons Attribution 4.0 International License. The images or other third party material in this article are included in the article’s Creative Commons license, unless indicated otherwise in the credit line; if the material is not included under the Creative Commons license, users will need to obtain permission from the license holder to reproduce the material. To view a copy of this license, visit http://creativecommons.org/licenses/by/4.0/ |
| Keywords: | Constructionist, Patient and public involvement, co-applicant, co-research, dementia, peer research |
| UCL classification: | UCL UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Div of Psychology and Lang Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Div of Psychology and Lang Sciences > Clinical, Edu and Hlth Psychology UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Division of Psychiatry |
| URI: | https://discovery.ucl.ac.uk/id/eprint/10082299 |
Archive Staff Only
 |
View Item |
