Research co-design in health: a rapid overview of reviews
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Abstract
Background: Billions of dollars are lost annually in health research that fails to create meaningful benefits for patients. Engaging in research co-design – the meaningful involvement of end-users in research – may help address this research waste. This rapid overview of reviews addressed three related questions, namely (1) what approaches to research co-design exist in health settings? (2) What activities do these research co-design approaches involve? (3) What do we know about the effectiveness of existing research co-design approaches? The review focused on the study planning phase of research, defined as the point up to which the research question and study design are finalised. Methods: Reviews of research co-design were systematically identified using a rapid overview of reviews approach (PROSPERO: CRD42019123034). The search strategy encompassed three academic databases, three grey literature databases, and a hand-search of the journal Research Involvement and Engagement . Two reviewers independently conducted the screening and data extraction and resolved disagreements through discussion. Disputes were resolved through discussion with a senior author (PB). One reviewer performed quality assessment. The results were narratively synthesised. Results: A total of 26 records (reporting on 23 reviews) met the inclusion criteria. Reviews varied widely in their application of ‘research co-design’ and their application contexts, scope and theoretical foci. The research co-design approaches identified involved interactions with end-users outside of study planning, such as recruitment and dissemination. Activities involved in research co-design included focus groups, interviews and surveys. The effectiveness of research co-design has rarely been evaluated empirically or experimentally; however, qualitative exploration has described the positive and negative outcomes associated with co-design. The research provided many recommendations for conducting research co-design, including training participating end-users in research skills, having regular communication between researchers and end-users, setting clear end-user expectations, and assigning set roles to all parties involved in co-design. Conclusions: Research co-design appears to be widely used but seldom described or evaluated in detail. Though it has rarely been tested empirically or experimentally, existing research suggests that it can benefit researchers, practitioners, research processes and research outcomes. Realising the potential of research co-design may require the development of clearer and more consistent terminology, better reporting of the activities involved and better evaluation.
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Systematic and deliberate theory-building in youth engagement in health research has been limited.
“Despite the rise in popularity and continued growth of youth engagement in health research, systematic and deliberate theory‐building has been limited.”
From A systematic review of theories, models and frameworks used for youth engagement in health research (2024) · cites this paper as [43]
The Background says health research co-design literature is complex and poorly synthesised, and the Discussion’s ‘Recommendations for research’ call for greater conceptual clarity and comparative work. These passages support a general gap in developing understanding of engagement, but the paper does not establish that systematic theory-building has been limited specifically for youth engagement. No page numbers are available in our copy. (LLM, conf=0.77)
Experimental — accuracy not yet measuredThe biggest gap in this area of research is the lack of evidence on impact gained through rigorous evaluation.
“Given the near‐unanimous recognition that the biggest gap in this area of research is the lack of evidence on impact gained through rigorous evaluation, 43 , 57 , 58 , 61 , 90 the small number of impact‐focused models and frameworks is noteworthy.”
From A systematic review of theories, models and frameworks used for youth engagement in health research (2024) · cites this paper as [43]
Review findings of empirical studies in PPI show that short-term, individual-level outcomes were more represented in the literature.
“This is consistent with review findings of empirical studies in PPI whereby short‐term, individual‐level outcomes were more represented in the literature. 43 , 91 , 92”
From A systematic review of theories, models and frameworks used for youth engagement in health research (2024) · cites this paper as [43]
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“67 With respect to the concept of engagement, the terminology used in the literature is vast and diverse 43 ; thus, we followed the SPOR definition of patient engagement in research as the meaningful and active collaboration between patients and researchers in research governance, decision ‐ making…”
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- Authors
- Slattery, P., Saeri, A. K., & Bragge, P.
- Affiliations
- Monash University (AU)
- Corresponding author
- Slattery, Peter
- Venue
- Health Research Policy and Systems
- Published
- 2020-02-11
- Volume
- 18
- Issue
- 1
- Pages
- 17-17
- ISSN
- 1478-4505 (ISSN-L)
- PMC
- PMC7014755
- OpenAlex
- W3008652539
- Cited by
- 1,313
- References
- 54
- Citations by year
- 2026: 259 · 2025: 311 · 2024: 315 · 2023: 188 · 2022: 132 · 2021: 97 · 2020: 10
- FWCI
- 20.43
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Locations
- Health Research Policy and Systems (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- Monash University Research Portal (Monash University) (submittedVersion, cc-by)
- DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
- Funders
- Transport Accident Commission
- Topics
- Health Sciences › Health Professions › General Health Professions › Mental Health and Patient Involvement
- Health Sciences › Health Professions › General Health Professions › Health Policy Implementation Science
- Health Sciences › Health Professions › General Health Professions › Community Health and Development
- Keywords
- research co-design, end-user involvement, patient and public involvement, research waste, learning planning, research engagement
- MeSH terms
- Systematic Reviews as Topic, Humans, Interinstitutional Relations, Research Design, Biomedical Research, Community-Based Participatory Research
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