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Embedding patient and public involvement: Managing tacit and explicit expectations.
Health Expect. 2019 12; 22(6):1231-1239.HE

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.

Authors+Show Affiliations

School of Health Sciences, Faculty of Medicine and Health Sciences, University of East Anglia, Norwich, UK.Research Department of Clinical, Educational and Health Psychology, University College London, London, UK. Research and Development Department, North East London NHS Foundation Trust, London, UK.Division of Psychiatry, University College London, London, UK.School of Health Sciences, Faculty of Medicine and Health Sciences, University of East Anglia, Norwich, UK.

Pub Type(s)

Journal Article
Research Support, Non-U.S. Gov't

Language

eng

PubMed ID

31538704

Citation

Poland, Fiona, et al. "Embedding Patient and Public Involvement: Managing Tacit and Explicit Expectations." Health Expectations : an International Journal of Public Participation in Health Care and Health Policy, vol. 22, no. 6, 2019, pp. 1231-1239.
Poland F, Charlesworth G, Leung P, et al. Embedding patient and public involvement: Managing tacit and explicit expectations. Health Expect. 2019;22(6):1231-1239.
Poland, F., Charlesworth, G., Leung, P., & Birt, L. (2019). Embedding patient and public involvement: Managing tacit and explicit expectations. Health Expectations : an International Journal of Public Participation in Health Care and Health Policy, 22(6), 1231-1239. https://doi.org/10.1111/hex.12952
Poland F, et al. Embedding Patient and Public Involvement: Managing Tacit and Explicit Expectations. Health Expect. 2019;22(6):1231-1239. PubMed PMID: 31538704.
* Article titles in AMA citation format should be in sentence-case
TY - JOUR T1 - Embedding patient and public involvement: Managing tacit and explicit expectations. AU - Poland,Fiona, AU - Charlesworth,Georgina, AU - Leung,Phuong, AU - Birt,Linda, Y1 - 2019/09/20/ PY - 2019/03/18/received PY - 2019/07/16/revised PY - 2019/07/18/accepted PY - 2019/9/21/pubmed PY - 2020/8/14/medline PY - 2019/9/21/entrez KW - Constructionist KW - Patient and public involvement KW - co-applicant KW - co-research KW - dementia KW - peer research SP - 1231 EP - 1239 JF - Health expectations : an international journal of public participation in health care and health policy JO - Health Expect VL - 22 IS - 6 N2 - 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. SN - 1369-7625 UR - https://www.unboundmedicine.com/medline/citation/31538704/Embedding_patient_and_public_involvement:_Managing_tacit_and_explicit_expectations_ L2 - https://doi.org/10.1111/hex.12952 DB - PRIME DP - Unbound Medicine ER -