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What the public think about participation in medical research during an influenza pandemic: an international cross-sectional survey

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. 2019. What the public think about participation in medical research during an influenza pandemic: an international cross-sectional survey. Public Health 177 , pp. 80-94. 10.1016/j.puhe.2019.07.005

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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.

Item Type: Article
Date Type: Publication
Status: Published
Schools: Medicine
Centre for Trials Research (CNTRR)
Publisher: WB Saunders
ISSN: 0033-3506
Date of First Compliant Deposit: 30 October 2019
Date of Acceptance: 2 July 2019
Last Modified: 25 Feb 2022 16:25

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