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- N Gobat, C C Butler, J Mollison, N A Francis, M Gal, V Harris, Webb S A R SAR University of Western Australia, Perth, Australia., J-P Byrne, A Watkins, P Sukumar, K Hood, and A Nichol.
- Nuffield Department of Primary Care Health Sciences, University of Oxford, United Kingdom. Electronic address: nina.gobat@phc.ox.ac.uk.
- Public Health. 2019 Dec 1; 177: 80-94.
ObjectivesThe 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 DesignThis is an international cross-sectional survey.MethodsWe 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.ResultsOf 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.ConclusionsOur 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.Copyright © 2019. Published by Elsevier Ltd.
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