What the public think about participation in medical research during an influenza pandemic: an international cross-sectional survey.
Open accessAbstract
Objectives The public and patients are primary contributors and beneficiaries of pandemic-relevant clinical research. However, their views on research participation during a pandemic have not been systematically studied. We aimed to understand public views regarding participation in clinical research during a hypothetical influenza pandemic.Study design This is an international cross-sectional survey.Methods We surveyed the views of nationally representative samples of people in Belgium, Poland, Spain, Ireland, the United Kingdom, Canada, Australia and New Zealand, using a scenario-based instrument during the 2017 regional influenza season. Descriptive and regression analyses were conducted.Results Of the 6804 respondents, 5572 (81.8%) thought pandemic-relevant research was important, and 5089 (74.8%) thought 'special rules' should be applied to make this research feasible. The respondents indicated willingness to take part in lower risk (4715, 69.3%) and higher risk (3585, 52.7%) primary care and lower risk (4780, 70.3%) and higher risk (4113, 60.4%) intensive care unit (ICU) study scenarios. For primary care studies, most (3972, 58.4%) participants preferred standard enrolment procedures such as prospective written informed consent, but 2327 (34.2%) thought simplified procedures would be acceptable. For ICU studies, 2800 (41.2%) preferred deferred consent, and 2623 (38.6%) preferred prospective third-party consent. Greater knowledge about pandemics, trust in a health professional, trust in the government, therapeutic misconception and having had ICU experience as a patient or carer predicted increased willingness to participate in pandemic-relevant research.Conclusions Our study indicates current public support for pandemic-relevant clinical research. Tailored information and initiatives to advance research literacy and maintain trust are required to support pandemic-relevant research participation and engagement.
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A cross-sectional survey found that 82% of patients (n = 6804) believed medical research should be conducted during epidemics, with trust in both the health professionals and government being cited as important for willingness to participate in research.
“A cross-sectional survey found that 82% of patients (n = 6804) believed medical research should be conducted during epidemics [15] with trust in both the health professionals and government being cited as important for willingness to participate in research.”
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 [15]
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References 34 · Cited by 36
Research works printed but not linked: 29
- [19]19. Journal of the History of Medicine and Allied Sciences 2015; 70 (2): 195-217. 344
- [6]6. of an Emerging Influenza Pandemic. Clinical Infectious Diseases 2018; 67 (3): 341-9. 348
- [2]2. Emergency Response. New England Journal of Medicine 2013; 368 (13): 1251-5. 352
- [4]4. Emerging Infectious Disease journal 2016; 22 (6). 354
- [8]8. 2018; 4 (2): 00046-2018. 358
- [10]10. multiple treatments. JAMA 2015; 313 (16): 1619-20. 360
- [12]12. Clinical Research. Critical Care Medicine 2018; 46 (3): 442-6. 362
- [2]2. pandemic research: a province wide, cross-sectional survey. Critical Care Medicine 2013; 41 (4): 1009364
- [6]6. expectations : an international journal of public participation in health care and health policy 2018; 368
- [7]7. 21 (1): 387-95. 369
- [9]9. in acute illness research: a rapid, systematic review to inform epi/pandemic research preparedness. 371
- [10]10. Trials 2015; 16 : 591. 372
- [13]13. Patients, Research and Clinical Practice. PLoS ONE 2016; 11 (3): e0152509. 375
- [19]19. American Thoracic Society 2014; 11 (5): 777-83. 381
- [3]3. Biosecurity & Bioterrorism 2007; 5 (1): 8-25. 388
- [5]5. pandemic: a qualitative study of the Canadian public's perspectives. BMC Public Health 2012; 12 : 241. 390
- [12]12. for rapid activation. Health Technology Assessment (Winchester, England) 2015; 19 (16): 1-78, vii-viii. 397
- [15]15. the FLU-CATs Study. Health Technology Assessment (Winchester, England) 2015; 19 (89): 1-132. 400
- [20]20. 9 (6): 748-61. 405
- [22]22. Health 1989; 79 (8): 1053-5. 407
- [2]2. phase II AIDS vaccine trial. Journal of acquired immune deficiency syndromes (1999) 2001; 27 (3): 409
- [10]10. Effectiveness, and Learning Health Care. New England Journal of Medicine 2014; 370 (8): 766-8. 417
- [14]14. randomized, controlled trials? N Engl J Med 1999; 340 : 804-7. 421
- [16]16. Informed Consent?: A National Survey. Annals of internal medicine 2015; 163 (5): 356-64. 423
- [18]18. low-risk pragmatic clinical trials in Spain. British journal of clinical pharmacology 2017; 83 (9): 1921425
- [4]4. and of the Council In: Union E, editor. Official Journal of the European Union: European Union; 2014. 434
- [6]6. biological samples in biomedical research: a mixed methods study. BMJ Open 2013; 3 (8): e003056. 436
- [9]9. 3 (8): e003022. 439
- [12]12. 2017; 12 (9): e0184224. 442 443
- Authors
- Gobat, N., Butler, C. C., Mollison, J., Francis, N. A., Gal, M., Harris, V., Webb, S. A. R., Byrne, J.-P., Watkins, A., Sukumar, P., Hood, K., & Nichol, A.
- Affiliations
- University of Oxford (GB)
- Cardiff University (GB)
- The University of Western Australia (AU)
- University College Dublin (IE)
- Corresponding author
- Gobat, N.
- ORCID
- Venue
- Public Health
- Publisher
- Elsevier BV
- Published
- 2019-12
- Volume
- 177
- Pages
- 80-94
- ISSN
- 0033-3506 (ISSN-L)
- OpenAlex
- W2965937226
- Cited by
- 36
- References
- 34
- Citations by year
- 2026: 3 · 2025: 3 · 2024: 2 · 2023: 4 · 2022: 10 · 2021: 5 · 2020: 9
- FWCI
- 5.52
- Type
- journal article
- Language
- en
- Open access
- green
- orca.cardiff.ac.uk
- Licence
- Locations
- Public Health (publishedVersion)
- PubMed (publishedVersion)
- ORCA Online Research @Cardiff (Cardiff University) (acceptedVersion)
- UWA Profiles and Research Repository (UWA) (submittedVersion)
- ePrints Soton (University of Southampton) (submittedVersion)
- ORCA Online Research @Cardiff (Cardiff University) (submittedVersion, cc-by-nc-nd)
- Funders
- European Union Seventh Framework Programme (602525)
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics and bioethics in healthcare
- Social Sciences › Health › Vaccine Coverage and Hesitancy
- Keywords
- research participation, pandemic influenza, informed consent, deferred consent, therapeutic misconception, trust in healthcare providers, public trust in government, research literacy, willingness to participate, primary care research, research ethics
- MeSH terms
- Adolescent, Adult, Aged, Community Participation, Cross-Sectional Studies, Female, Humans, Influenza, Human, Male, Middle Aged, Public Opinion, Biomedical Research, Internationality, Young Adult, Pandemics
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