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

<p><strong>Objectives</strong></p> <p>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...

Full description

Bibliographic Details
Main Authors: Gobat, N, Butler, C, Mollison, J, Francis, N, Gal, M, Harris, V, Webb, S, Byrne, J, Watkins, A, Sukumar, P, Hood, K, Nichol, A
Format: Journal article
Language:English
Published: Elsevier 2019
Description
Summary:<p><strong>Objectives</strong></p> <p>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.</p> <p><strong>Study design</strong></p> <p>This is an international cross-sectional survey.</p> <p><strong>Methods:</strong> </p> <p>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.</p> <p><strong>Results</strong></p> <p>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.</p> <p><strong>Conclusions</strong></p> <p>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.</p>