Effective engagement and involvement with community stakeholders in the co-production of global health research

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Abstract

Doreen Tembo and colleagues argue that small changes as well as larger system-wide changes can strengthen citizens’ contribution to knowledge in health research

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A Ladder Of Citizen Participation

Sherry Arnstein (1969)

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Patient engagement in research: a systematic review

Juan Pablo Domecq, Gabriela Prutsky, Tarig Elraiyah … (2014)

Background A compelling ethical rationale supports patient engagement in healthcare research. It is also assumed that patient engagement will lead to research findings that are more pertinent to patients’ concerns and dilemmas. However; it is unclear how to best conduct this process. In this systematic review we aimed to answer 4 key questions: what are the best ways to identify patient representatives? How to engage them in designing and conducting research? What are the observed benefits of patient engagement? What are the harms and barriers of patient engagement? Methods We searched MEDLINE, EMBASE, PsycInfo, Cochrane, EBSCO, CINAHL, SCOPUS, Web of Science, Business Search Premier, Academic Search Premier and Google Scholar. Included studies were published in English, of any size or design that described engaging patients or their surrogates in research design. We conducted an environmental scan of the grey literature and consulted with experts and patients. Data were analyzed using a non-quantitative, meta-narrative approach. Results We included 142 studies that described a spectrum of engagement. In general, engagement was feasible in most settings and most commonly done in the beginning of research (agenda setting and protocol development) and less commonly during the execution and translation of research. We found no comparative analytic studies to recommend a particular method. Patient engagement increased study enrollment rates and aided researchers in securing funding, designing study protocols and choosing relevant outcomes. The most commonly cited challenges were related to logistics (extra time and funding needed for engagement) and to an overarching worry of a tokenistic engagement. Conclusions Patient engagement in healthcare research is likely feasible in many settings. However, this engagement comes at a cost and can become tokenistic. Research dedicated to identifying the best methods to achieve engagement is lacking and clearly needed.

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Mapping the impact of patient and public involvement on health and social care research: a systematic review.

Jo Brett, Sophie Staniszewska, Carole Mockford … (2014)

There is an increasing international interest in patient and public involvement (PPI) in research, yet relatively little robust evidence exists about its impact on health and social care research. To identify the impact of patient and public involvement on health and social care research. A systematic search of electronic databases and health libraries was undertaken from 1995 to 2009. Data were extracted and quality assessed utilizing the guidelines of the NHS Centre for Reviews and Dissemination 2009 and the Critical Appraisal Skills Programme (CASP). Grey literature was assessed using the Dixon-Woods et al. (2005) checklist. All study types that reported the impact PPI had on the health and/or social care research study. A total of 66 studies reporting the impact of PPI on health and social care research were included. The positive impacts identified enhanced the quality and appropriateness of research. Impacts were reported for all stages of research, including the development of user-focused research objectives, development of user-relevant research questions, development of user-friendly information, questionnaires and interview schedules, more appropriate recruitment strategies for studies, consumer-focused interpretation of data and enhanced implementation and dissemination of study results. Some challenging impacts were also identified. This study provides the first international evidence of PPI impact that has emerged at all key stages of the research process. However, much of the evidence base concerning impact remains weak and needs significant enhancement in the next decade. © 2012 John Wiley & Sons Ltd.

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Author and article information

Contributors

Doreen Tembo: Role: senior research manager patient and public involvement and external review

Gary Hickey: Role: senior public involvement manager

Cristian Montenegro: Role: assistant professor

David Chandler: Role: chief executive

Erica Nelson: Role: research fellow

Katie Porter: Role: assistant research manager, patient and public involvement

Lisa Dikomitis: Role: professor of anthropology and sociology of health

Mary Chambers: Role: head of public engagement with science

Moses Chimbari: Role: professor of public health

Noni Mumba: Role: head of community engagement

Peter Beresford: Role: emeritus professor of citizen participation

Peter O Ekiikina: Role: public contributor low and middle income countries

Rosemary Musesengwa: Role: senior researcher

Sophie Staniszewska: Role: professor of health research (patient and public involvement and experiences of care)

Tina Coldham: Role: public adviser and research fellow

Una Rennard: Role: public contributor to health and social care research

Journal

Journal ID (nlm-ta): BMJ

Journal ID (iso-abbrev): BMJ

Journal ID (publisher-id): BMJ-UK

Journal ID (hwp): bmj

Title: The BMJ

Publisher: BMJ Publishing Group Ltd.

ISSN (Print): 0959-8138

ISSN (Electronic): 1756-1833

Publication date Collection: 2021

Publication date (Electronic): 16 February 2021

Volume: 372

Electronic Location Identifier: n178

Affiliations

[1 ]Wessex Institute, Faculty of Medicine, University of Southampton, Southampton, UK

[2 ]School of Health Sciences, University of Brighton, Brighton, UK

[3 ]School of Nursing, Pontificia Universidad Católica de Chile, Santiago, Chile

[4 ]The Psoriasis and Psoriatic Arthritis Alliance, St Albans, Hertfordshire, UK

[5 ]London School of Hygiene and Tropical Medicine, London, UK

[6 ]School of Medicine, Keele University, Staffordshire, UK

[7 ]Clinical Research Unit, and Nuffield Department of Medicine, Oxford University, Vietnam

[8 ]University of KwaZulu-Natal, School of Nursing and Public Health, South Africa

[9 ]KEMRI Wellcome Trust Research Programme, Nuffield Department of Medicine, Centre for Tropical Medicine and Global Health, University of Oxford, Kenya

[10 ]School of Health and Social Care, University of Essex, Colchester, UK

[11 ]Foundation for Open Development, Tororo, Uganda

[12 ]Department of Psychiatry, University of Oxford, Oxford, UK

[13 ]Warwick Medical School, Division of Health Sciences, University of Warwick, Coventry, UK

[14 ]National Institute for Health Research Centre for Engagement and Dissemination, London, UK

[15 ]School for Social Care Research, National Institute Health Research, London, UK

[16 ]Oxfordshire, UK

Author notes

Correspondence to: D Tembo d.tembo@ 123456soton.ac.uk

Article

Publisher ID: temd059593

DOI: 10.1136/bmj.n178

PMC ID: 7879275

PubMed ID: 33593805

SO-VID: 041cf780-4040-43e4-a58e-f64062fb9458

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This is an Open Access article distributed under the terms of the Creative Commons Attribution IGO License ( https://creativecommons.org/licenses/by-nc/3.0/igo/), which permits use, distribution, and reproduction for non-commercial purposes in any medium, provided the original work is properly cited.

Effective engagement and involvement with community stakeholders in the co-production of global health research

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Most cited references 46

A Ladder Of Citizen Participation

Patient engagement in research: a systematic review

Mapping the impact of patient and public involvement on health and social care research: a systematic review.

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