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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Concerns during the pandemic included worry that visiting health settings could pose a threat to the participant's health from infection of Covid-19.
“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]
The Results (Identified psychosocial themes; page unavailable) identify fear of health risks as a barrier to research participation, including concerns about an HIV vaccine increasing susceptibility to HIV. They do not report pandemic-era concerns about catching COVID-19 while visiting health settings; the infection risk discussed concerns an intervention, not a visit. (LLM, conf=0.84)
Experimental — accuracy not yet measuredLow uptake of research participation stems from a lack of knowledge on the purpose/function of research and if the research was safe to participate in.
“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]
In Results > Identified psychosocial themes (page not provided), the paper reports that lack of understanding of clinical research could discourage participation and that fears about risks and intervention safety were barriers. It does not specifically identify lack of knowledge of research’s purpose or uncertainty about whether research itself was safe as the causes of low uptake; it also describes the effect of knowledge as mixed. (LLM, conf=0.84)
Experimental — accuracy not yet measuredSheridan (2020) and colleagues noted that research participation, even before the onset of Covid-19, had a low uptake.
“Sheridan (2020) and colleagues noted that research participation, even before the onset of Covid-19, had a low uptake [6].”
Other concerns about research participation include feeling that privacy or confidentiality may be breached, being used as a 'guinea pig', and a general mistrust of researchers' intentions.
“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].”
Concerns during the pandemic included difficulties understanding safety protocols or perceptions that health sites were not stringent enough.
“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]
The Results section (Identified psychosocial themes; page unavailable) discusses fears about trial interventions and limited understanding of clinical research, not pandemic safety protocols or whether health sites followed them stringently. Our copy also does not address the cited concern that visiting a health setting could expose participants to COVID-19; searches for those terms found no supporting passage. (LLM, conf=0.76)
Experimental — accuracy not yet measured
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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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- 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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