1. What the public think about participation in medical research during an influenza pandemic: an international cross-sectional survey.
- Author
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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., and Nichol, A.
- Subjects
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INFLUENZA treatment , *EPIDEMICS , *INFLUENZA , *INFORMED consent (Medical law) , *INTENSIVE care units , *RESEARCH methodology , *MEDICAL research , *PRIMARY health care , *PUBLIC opinion , *REGRESSION analysis , *RESEARCH ethics , *RISK assessment , *SURVEYS , *PATIENT participation , *CROSS-sectional method , *DISEASE risk factors - Abstract
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. This is an international cross-sectional survey. 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. 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. 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. • There is strong public support for pandemic-relevant clinical research initiatives. • Willingness to take part and to sign up under permissive approaches depends on type of research and key participant factors. • Knowledge of pandemics, trust in doctors and government, and experience of critical illness influence research participation. [ABSTRACT FROM AUTHOR]
- Published
- 2019
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