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Patient and public involvement in health research in low and middle-income countries: a systematic review

Cook, Natalie; Siddiqi, Najma; Twiddy, Maureen; Kenyon, Richard

Authors

Natalie Cook

Najma Siddiqi

Richard Kenyon

Abstract

Objectives: Patient and public involvement (PPI) is argued to lead to higher quality health research, which is more relatable to and helps empower the public. We synthesised the evidence to look for examples of PPI in health research in low/middle-income countries (LMICs), looking at levels of involvement and impact. Additionally, we considered the impact of who was undertaking the research on the level of involvement and reported impact.

Design: Systematic review.

Data sources: EMBASE, Medline and PsychINFO, along with hand-searching references, grey literature, Google search and expert advice.

Eligibility criteria: Any health research with evidence of patient or public involvement, with no language restrictions dated from 1978 to 1 Dec 2017.

Data extraction and synthesis: Data relating to stage and level of involvement, as well as impact, were extracted by one researcher (NC), and a coding framework was developed using an inductive approach to examine the impact of PPI on research. Extracted data were then independently coded by a second lay researcher (RK) to validate the data being collected. Discrepancies were referred to a third independent reviewer (MT) for review and consensus reached.

Results: Sixty-two studies met the inclusion criteria. The review revealed the most common stage for PPI was in research planning, and the most common level of involvement was collaboration. Most studies did not provide evidence of effectiveness or elaborate on the impact of PPI, and they tended to report impact from the researcher’s perspective. Where impact was mentioned, this generally related to increased relevance to the community, empowerment of participants and alterations in study design.

Conclusions: The literature describing approaches to and impact of PPI on LMIC health research is sparse. As PPI is essential to conducting high-quality research, it should be fully reported and evaluated at the end of the research project.

Journal Article Type Article
Publication Date 2019-05
Journal BMJ Open
Print ISSN 2044-6055
Electronic ISSN 2044-6055
Publisher BMJ Publishing Group
Peer Reviewed Peer Reviewed
Volume 9
Issue 5
Pages e026514
DOI https://doi.org/10.1136/bmjopen-2018-026514
Keywords General Medicine
Publisher URL https://bmjopen.bmj.com/content/9/5/e026514

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© Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.
This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.



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