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‘About sixty percent I want to do it’. Health researchers’ attitudes to, and experiences of, patient and public involvement (PPI) : a qualitative interview study

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Boylan, Anne-Marie, Locock, Louise, Thompson, Richard and Staniszewska, Sophie (2019) ‘About sixty percent I want to do it’. Health researchers’ attitudes to, and experiences of, patient and public involvement (PPI) : a qualitative interview study. Health Expectations, 22 (4). pp. 721-730. doi:10.1111/hex.12883 ISSN 1369-6513.

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Official URL: https://doi.org/10.1111/hex.12883

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Abstract

Background

Funders, policy-makers and research organisations 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 operationalised 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 organisational approach to support involvement.

Item Type: Journal Article
Subjects: R Medicine > RA Public aspects of medicine
Divisions: Faculty of Science, Engineering and Medicine > Medicine > Warwick Medical School
Library of Congress Subject Headings (LCSH): Public health -- Citizen participation, Public health administration -- Research
Journal or Publication Title: Health Expectations
Publisher: Blackwell
ISSN: 1369-6513
Official Date: August 2019
Dates:
DateEvent
August 2019Published
29 March 2019Available
12 March 2019Accepted
Volume: 22
Number: 4
Page Range: pp. 721-730
DOI: 10.1111/hex.12883
Status: Peer Reviewed
Publication Status: Published
Access rights to Published version: Open Access (Creative Commons)
Date of first compliant deposit: 14 March 2019
Date of first compliant Open Access: 20 March 2019
RIOXX Funder/Project Grant:
Project/Grant IDRIOXX Funder NameFunder ID
INVOLVE[NIHR] National Institute for Health Researchhttp://dx.doi.org/10.13039/501100000272
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