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"About sixty per cent I want to do it": Health researchers' attitudes to, and experiences of, patient and public involvement (PPI)-A qualitative interview study.
Health Expect. 2019 08; 22(4):721-730.HE

Abstract

BACKGROUND

Funders, policy-makers and research organizations increasingly expect health researchers in the UK to involve patients and members of the public in research. It has been stated that it makes research "more effective, more credible and often more cost efficient." However, the evidence base for this assertion is evolving and can be limited. There has been little research into how health researchers feel about involving people, how they go about it, how they manage formal policy rhetoric, and what happens in practice.

OBJECTIVE

To explore researchers' experiences and perceptions of patient and public involvement (PPI).

METHODS

Semi-structured interview study of 36 health researchers (both clinical and non-clinical), with data collection and thematic analysis informed by the theoretical domains framework.

RESULTS

In the course of our analysis, we developed four themes that encapsulate the participants' experiences and perceptions of PPI. Participants expressed ambivalence, cynicism and enthusiasm about PPI, an activity that creates emotional labour, which is both rewarding and burdensome and requires practical and social support. It is operationalized in an academic context influenced by power and incentives.

DISCUSSION AND CONCLUSIONS

Researchers' experiences and attitudes towards patient and public involvement are a key factor in the successful embedding of involvement within the wider research culture. We call for a culture change that supports the development of effective organizational approach to support involvement.

Authors+Show Affiliations

Nuffield Department of Primary Care Health Sciences, University of Oxford, Oxford, UK.Health Services Research Unit, University of Aberdeen, Aberdeen, UK.Institute of Health and Society, Newcastle University, Newcastle-upon-Tyne, UK.Warwick Research in Nursing, Warwick Medical School, University of Warwick, Coventry, UK.

Pub Type(s)

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

Language

eng

PubMed ID

30927334

Citation

Boylan, Anne-Marie, et al. ""About Sixty Per Cent I Want to Do It": Health Researchers' Attitudes To, and Experiences Of, Patient and Public Involvement (PPI)-A Qualitative Interview Study." Health Expectations : an International Journal of Public Participation in Health Care and Health Policy, vol. 22, no. 4, 2019, pp. 721-730.
Boylan AM, Locock L, Thomson R, et al. "About sixty per cent I want to do it": Health researchers' attitudes to, and experiences of, patient and public involvement (PPI)-A qualitative interview study. Health Expect. 2019;22(4):721-730.
Boylan, A. M., Locock, L., Thomson, R., & Staniszewska, S. (2019). "About sixty per cent I want to do it": Health researchers' attitudes to, and experiences of, patient and public involvement (PPI)-A qualitative interview study. Health Expectations : an International Journal of Public Participation in Health Care and Health Policy, 22(4), 721-730. https://doi.org/10.1111/hex.12883
Boylan AM, et al. "About Sixty Per Cent I Want to Do It": Health Researchers' Attitudes To, and Experiences Of, Patient and Public Involvement (PPI)-A Qualitative Interview Study. Health Expect. 2019;22(4):721-730. PubMed PMID: 30927334.
* Article titles in AMA citation format should be in sentence-case
TY - JOUR T1 - "About sixty per cent I want to do it": Health researchers' attitudes to, and experiences of, patient and public involvement (PPI)-A qualitative interview study. AU - Boylan,Anne-Marie, AU - Locock,Louise, AU - Thomson,Richard, AU - Staniszewska,Sophie, Y1 - 2019/03/29/ PY - 2018/12/22/received PY - 2019/03/07/revised PY - 2019/03/07/accepted PY - 2019/3/31/pubmed PY - 2020/9/15/medline PY - 2019/3/31/entrez KW - health and medical research KW - patient and public involvement KW - qualitative interviews SP - 721 EP - 730 JF - Health expectations : an international journal of public participation in health care and health policy JO - Health Expect VL - 22 IS - 4 N2 - BACKGROUND: Funders, policy-makers and research organizations increasingly expect health researchers in the UK to involve patients and members of the public in research. It has been stated that it makes research "more effective, more credible and often more cost efficient." However, the evidence base for this assertion is evolving and can be limited. There has been little research into how health researchers feel about involving people, how they go about it, how they manage formal policy rhetoric, and what happens in practice. OBJECTIVE: To explore researchers' experiences and perceptions of patient and public involvement (PPI). METHODS: Semi-structured interview study of 36 health researchers (both clinical and non-clinical), with data collection and thematic analysis informed by the theoretical domains framework. RESULTS: In the course of our analysis, we developed four themes that encapsulate the participants' experiences and perceptions of PPI. Participants expressed ambivalence, cynicism and enthusiasm about PPI, an activity that creates emotional labour, which is both rewarding and burdensome and requires practical and social support. It is operationalized in an academic context influenced by power and incentives. DISCUSSION AND CONCLUSIONS: Researchers' experiences and attitudes towards patient and public involvement are a key factor in the successful embedding of involvement within the wider research culture. We call for a culture change that supports the development of effective organizational approach to support involvement. SN - 1369-7625 UR - https://www.unboundmedicine.com/medline/citation/30927334/"About_sixty_per_cent_I_want_to_do_it":_Health_researchers'_attitudes_to_and_experiences_of_patient_and_public_involvement__PPI__A_qualitative_interview_study_ L2 - https://doi.org/10.1111/hex.12883 DB - PRIME DP - Unbound Medicine ER -