Measurable outcomes of consumer engagement in health research: A scoping review

Emily DeBortoli¹, H Peter Soyer^{1

2}, David Milne³, Nadeeka Dissanayaka^{4

5

6}, Coral Gartner⁷, Jeanette Holt⁸, Kym Rae^{9

10}, Laura Robison¹¹, Courtney K Wallingford¹, Aideen M McInerney-Leo¹

Affiliations

¹ Dermatology Research Centre, The University of Queensland Diamantina Institute, The University of Queensland, Brisbane, QLD, Australia.
² Dermatology Department, Princess Alexandra Hospital, Brisbane, QLD, Australia.
³ Human Research Ethics Committee, Translational Research Institute, Brisbane, QLD, Australia.
⁴ Faculty of Medicine, Royal Brisbane and Women's Hospital, University of Queensland Centre for Clinical Research, The University of Queensland, Brisbane, QLD, Australia.
⁵ School of Psychology, The University of Queensland, Brisbane, QLD, Australia.
⁶ Department of Neurology, Royal Brisbane and Women's Hospital, Brisbane, QLD, Australia.
⁷ Faculty of Medicine, School of Public Health, NHMRC Centre of Research Excellence on Achieving the Tobacco Endgame, The University of Queensland, Brisbane, QLD, Australia.
⁸ The University of Queensland Diamantina Institute, The University of Queensland, Brisbane, QLD, Australia.
⁹ Aubigny Place, Mater Research Institute, Brisbane, QLD, Australia.
¹⁰ Faculty of Medicine, University of Queensland, Herston, QLD, Australia.
¹¹ Australasian Kidney Trials Network, Translational Research Institute, The University of Queensland, Brisbane, QLD, Australia.

PMID: 36324444
PMCID: PMC9621387
DOI: 10.3389/fpubh.2022.994547

Measurable outcomes of consumer engagement in health research: A scoping review

Emily DeBortoli et al. Front Public Health. 2022.

. 2022 Oct 17:10:994547.

doi: 10.3389/fpubh.2022.994547. eCollection 2022.

Authors

Affiliations

¹ Dermatology Research Centre, The University of Queensland Diamantina Institute, The University of Queensland, Brisbane, QLD, Australia.
² Dermatology Department, Princess Alexandra Hospital, Brisbane, QLD, Australia.
³ Human Research Ethics Committee, Translational Research Institute, Brisbane, QLD, Australia.
⁴ Faculty of Medicine, Royal Brisbane and Women's Hospital, University of Queensland Centre for Clinical Research, The University of Queensland, Brisbane, QLD, Australia.
⁵ School of Psychology, The University of Queensland, Brisbane, QLD, Australia.
⁶ Department of Neurology, Royal Brisbane and Women's Hospital, Brisbane, QLD, Australia.
⁷ Faculty of Medicine, School of Public Health, NHMRC Centre of Research Excellence on Achieving the Tobacco Endgame, The University of Queensland, Brisbane, QLD, Australia.
⁸ The University of Queensland Diamantina Institute, The University of Queensland, Brisbane, QLD, Australia.
⁹ Aubigny Place, Mater Research Institute, Brisbane, QLD, Australia.
¹⁰ Faculty of Medicine, University of Queensland, Herston, QLD, Australia.
¹¹ Australasian Kidney Trials Network, Translational Research Institute, The University of Queensland, Brisbane, QLD, Australia.

PMID: 36324444
PMCID: PMC9621387
DOI: 10.3389/fpubh.2022.994547

Abstract

Background: Consumer engagement is increasingly recognized as an instrumental component of health research, with many institutions and international bodies mandating it as part of the research and funding process. Given an increasing utilization of consumer engagement in health research, it is critical to identify the literature which support its value and tools that capture successful outcomes. To develop an overview of the literature, we conducted an umbrella scoping review exploring important outcomes of consumer engagement in health research combined with a scoping review of relevant frameworks. Specifically, we aimed to capture outcomes which reflect authentic and meaningful consumer engagement.

Methods: Four databases (PubMed, Embase, CINAHL and Cochrane Library) were searched using key search terms. Records were included if they were review articles or frameworks that addressed outcomes of consumer engagement in health research. Data was analyzed using descriptive statistics and an inductive qualitative content analysis. Identified outcomes were sorted based on the three most relevant stakeholder groups (consumer, researcher, institution).

Results: A total of twenty articles that explored a variety of health disciplines were included. We identified fifteen measurable outcomes of consumer engagement in health research. Eight core outcomes were relevant to all stakeholder groups, and were considered fundamental to authentic consumer engagement including (1) trust, (2) empowerment, (3) respect, (4) confidence in the outcomes of the research, (5) transparency of the research process, (6) satisfaction with the consumer engagement program, (7) knowledge and experiences of consumers, and (8) degree of consumer engagement. Outcomes pertaining to specific stakeholder groups included representativeness and diversity of the consumer groups, research relevance to consumers, funding opportunities, quality/validity of the research, recruitment/retention rates, translation and dissemination of research, and interpretation of results.

Conclusion: This review identified key measurable outcomes that could be captured when evaluating the impacts of consumer engagement on health research and the success of consumer engagement programs. All outcomes identified were relatively underexplored within the literature, and inadequately and/or inconsistently evaluated amongst studies. Future research should consult all stakeholder groups to identify outcomes perceived to be reflective of optimal consumer engagement.

Keywords: community; consumer; engagement; healthcare; involvement; outcomes; research.

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Conflict of interest statement

Author HS was a shareholder of MoleMap NZ Limited and e-derm consult GmbH and undertakes regular teledermatological reporting for both companies and he was a Medical Consultant for Canfield Scientific Inc, MoleMap Australia Pty Ltd, Blaze Bioscience Inc, and a Medical Advisor for First Derm. The remaining authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

Figures

**Figure 1**
PRISMA flowchart of database and citation research.

**Figure 2**
Measurable outcomes of consumer engagement mapped to relevant stakeholders.

See this image and copyright information in PMC

References

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Measurable outcomes of consumer engagement in health research: A scoping review

Affiliations

Measurable outcomes of consumer engagement in health research: A scoping review

Authors

Affiliations

Abstract

Conflict of interest statement

Figures

References

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Full Text Sources