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Why do patients take part in research? An overview of systematic reviews of psychosocial barriers and facilitators
Open accessAbstract
Background: Understanding why people take part in health research is critical to improve research efficiency and generalisability. The aim of this overview of systematic reviews was to identify psychosocial determinants of research participation and map them to psychological theory and empirical recruitment research, to identify effective strategies to increase research participation. Methods: Qualitative and quantitative systematic reviews were systematically identified. No date or language limits were applied. Two reviewers independently selected reviews. Methodological quality was rated using AMSTAR, and poor-quality reviews (scoring 0–3) were excluded. Barriers and facilitators were coded to psychological theory (Theoretical Domains Framework) and empirical recruitment research (recruitment interventions that had been subjected to randomised controlled trial evaluation). Results: We included 26 systematic reviews (429 unique primary studies), covering a wide range of patient populations and health settings. We identified five groups of facilitators, of which three were dominant (potential for personal benefit, altruism, trust) and appear to be relevant across research setting and design. We identified nine groups of barriers, which were more dependent on the particular study (context, population, design). Two determinants (participant information, social influences) were found to be both barriers and facilitators. Barriers and facilitators could be coded to the Motivation and Opportunity components of the Theoretical Domains Framework; only one was coded to a Capability component. There was some overlap between psychosocial determinants and empirical recruitment research, but some barriers and facilitators had not been tested at all. Conclusions: Identifying effective recruitment strategies could increase the efficiency and generalisability of primary research. We identified a number of barriers and facilitators that could be addressed by researchers. There is a need for more research to identify effective recruitment strategies that draw on the psychosocial facilitators and barriers identified in this overview.
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“difficulties understanding safety protocols or perceptions that health sites were not stringent enough and [2] worry that visiting health settings could pose a threat to the participant’s health from infection of Covid-19 [6,9].”
From Legacy lessons from the COVID-19 era to improve trial participation and retention: Views from trial participants, PPIE contributors and trial staff across the NIHR portfolio (2024) · cites this paper as [6]
Experimental — accuracy not yet measuredThe source backs part of the claim, not all of it — or backs it for a different population, condition or comparison.
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“They cited the low uptake stemming from a lack of knowledge on the purpose/function of research and if the research was safe to participate in.”
From Legacy lessons from the COVID-19 era to improve trial participation and retention: Views from trial participants, PPIE contributors and trial staff across the NIHR portfolio (2024) · cites this paper as [6]
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“Sheridan (2020) and colleagues noted that research participation, even before the onset of Covid-19, had a low uptake [6].”
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“Other concerns included: feeling that their privacy or confidentiality may be breached, being used as a ‘guinea pig’, and a general mistrust of researchers’ intentions [6].”
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“difficulties understanding safety protocols or perceptions that health sites were not stringent enough and [2] worry that visiting health settings could pose a threat to the participant’s health from infection of Covid-19 [6,9].”
From Legacy lessons from the COVID-19 era to improve trial participation and retention: Views from trial participants, PPIE contributors and trial staff across the NIHR portfolio (2024) · cites this paper as [6]
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Self-citationAdditional file 1 of The People’s Trial: supporting the public’s understanding of randomised trials
Finucane, E., O’Brien, A., Treweek, S., Newell, J., Das, K. K., Chapman, S., Wicks, P., Galvin, S., Healy, P., Biesty, L., et al. (2022) · Figshare · doi:10.6084/m9.figshare.19335932
Brehaut, J. C., Lavin Venegas, C., Hudek, N., Presseau, J., Carroll, K. A., & Rodger, M. (2021) · Figshare · doi:10.6084/m9.figshare.14462835
Knapp, P., Moe-Byrne, T., Martin-Kerry, J., Sheridan, R., Roche, J., Coleman, E., Bower, P., Higgins, S., Stones, C., Graffy, J., et al. (2024) · Figshare · doi:10.6084/m9.figshare.26601982
Self-citationKnapp, P., Moe-Byrne, T., Martin-Kerry, J., Sheridan, R., Roche, J., Coleman, E., Bower, P., Higgins, S., Stones, C., Graffy, J., et al. (2024) · Figshare · doi:10.6084/m9.figshare.26601979
Self-citationMadurasinghe, V., Knapp, P., Eldridge, S. M., Collier, D., Treweek, S., Rick, J., Graffy, J., Parker, A., Salisbury, C., Torgerson, D. J., et al. (2024) · Figshare · doi:10.6084/m9.figshare.26637408
Self-citationStart, C., McBride, M., Zhu, G., Shaikh, S., & Pierce, J. M. (2024) · Figshare · doi:10.6084/m9.figshare.25045411
Start, C., McBride, M., Zhu, G., Shaikh, S., & Pierce, J. M. (2024) · Figshare · doi:10.6084/m9.figshare.25045661
Genuis, S. K., Luth, W., Weber, G., Bubela, T. M., & Johnston, W. S. W. (2024) · Figshare · doi:10.6084/m9.figshare.24264776
Godskesen, T., Björk, J., & Juth, N. (2023) · Figshare · doi:10.6084/m9.figshare.24792232
Moffat, K. R., Shi, W., Cannon, P., & Sullivan, F. (2023) · Figshare · doi:10.6084/m9.figshare.22616213
Moffat, K. R., Shi, W., Cannon, P., & Sullivan, F. (2023) · Figshare · doi:10.6084/m9.figshare.22616222
Moffat, K. R., Shi, W., Cannon, P., & Sullivan, F. (2023) · Figshare · doi:10.6084/m9.figshare.22616210
Moffat, K. R., Shi, W., Cannon, P., & Sullivan, F. (2023) · Figshare · doi:10.6084/m9.figshare.22616219
Start, C., McBride, M., Zhu, G., Shaikh, S., & Pierce, J. M. (2024) · Figshare · doi:10.6084/m9.figshare.26670885
Additional file 2 of The People’s Trial: supporting the public’s understanding of randomised trials
Finucane, E., O’Brien, A., Treweek, S., Newell, J., Das, K. K., Chapman, S., Wicks, P., Galvin, S., Healy, P., Biesty, L., et al. (2022) · Figshare · doi:10.6084/m9.figshare.19335935
Czwikla, J., Herzberg, A., Kapp, S., Kloep, S., Rothgang, H., Nitschke, I., Haffner, C., & Hoffmann, F. (2022) · Figshare · doi:10.6084/m9.figshare.20279281
Moffat, K. R., Shi, W., Cannon, P., & Sullivan, F. (2023) · Figshare · doi:10.6084/m9.figshare.22616216
Metadata
- Authors
- Sheridan, R., Martin-Kerry, J., Hudson, J., Parker, A., Bower, P., & Knapp, P.
- Affiliations
- University of York (GB)
- King's College London (GB)
- University of Manchester (GB)
- Corresponding author
- Knapp, Peter
- Venue
- Trials
- Published
- 2020-03-12
- Volume
- 21
- Issue
- 1
- Pages
- 259-259
- ISSN
- 1745-6215 (ISSN-L)
- PMC
- PMC7069042
- OpenAlex
- W3011041837
- Cited by
- 223
- References
- 56
- Citations by year
- 2026: 35 · 2025: 44 · 2024: 44 · 2023: 41 · 2022: 34 · 2021: 18 · 2020: 7
- FWCI
- 4.18
- Type
- journal article
- Language
- en
- Update notices
- correction (2020-10-08)
- Open access
- gold
- doi.org
- Locations
- Trials (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- White Rose Research Online (University of Leeds, The University of Sheffield, University of York) (acceptedVersion)
- UEA Digital Repository (University of East Anglia) (acceptedVersion)
- DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
- Health Sciences › Health Professions › General Health Professions › Health Policy Implementation Science
- Health Sciences › Health Professions › General Health Professions › Mental Health and Patient Involvement
- Keywords
- research participation, barriers and facilitators, psychosocial factors, participant recruitment, altruism, trust, personal benefits, Theoretical Domains Framework, recruitment interventions, social influence, participant information
- MeSH terms
- Systematic Reviews as Topic, Humans, Motivation, Patient Participation, Research, Patient Selection
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