“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

Anne-Marie Boylan (Corresponding Author), Louise Locock, Richard Thomson, Sophie Staniszewska

Research output: Contribution to journalArticle

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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.
Original languageEnglish
Pages (from-to)721-730
Number of pages10
JournalHealth Expectations
Volume22
Issue number4
Early online date29 Mar 2019
DOIs
Publication statusPublished - Aug 2019

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Attitude to Health
Research Personnel
Interviews
Research
Health
Social Support
Motivation
Organizations
Costs and Cost Analysis

Keywords

  • health and medical research
  • patient and public involvement
  • qualitative interviews

Cite this

“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. / Boylan, Anne-Marie (Corresponding Author); Locock, Louise; Thomson, Richard; Staniszewska, Sophie.

In: Health Expectations, Vol. 22, No. 4, 08.2019, p. 721-730.

Research output: Contribution to journalArticle

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abstract = "BackgroundFunders, 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.ObjectiveTo explore researchers’ experiences and perceptions of patient and public involvement (PPI).MethodsSemi‐structured interview study of 36 health researchers (both clinical and non‐clinical), with data collection and thematic analysis informed by the theoretical domains framework.ResultsIn 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 conclusionsResearchers’ 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.",
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note = "This research was funded through a personal fellowship awarded to Louise Locock by the NIHR Oxford Biomedical Research Centre. Anne‐Marie Boylan received support from the NIHR Collaboration for Leadership in Applied Research and Care Oxford. Sophie Staniszewska is part‐funded by the NIHR Collaboration for Leadership in Applied Research and Care West Midlands. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care. ACKNOWLEDGEMENTS We are grateful to the participants for sharing their experiences to inform this research. This research was supported by a panel comprising patients, members of the public, AND health, clinical and medical researchers. We are grateful for their support.",
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N2 - BackgroundFunders, 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.ObjectiveTo explore researchers’ experiences and perceptions of patient and public involvement (PPI).MethodsSemi‐structured interview study of 36 health researchers (both clinical and non‐clinical), with data collection and thematic analysis informed by the theoretical domains framework.ResultsIn 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 conclusionsResearchers’ 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.

AB - BackgroundFunders, 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.ObjectiveTo explore researchers’ experiences and perceptions of patient and public involvement (PPI).MethodsSemi‐structured interview study of 36 health researchers (both clinical and non‐clinical), with data collection and thematic analysis informed by the theoretical domains framework.ResultsIn 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 conclusionsResearchers’ 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.

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