Knowledge, Trust and Experience Make the Difference: What the Public Think About Participation in Medical Research During an Influenza Pandemic - An International Cross-Sectional Survey

Abstract

Background: The public and patients are primary contributors and beneficiaries of pandemic-relevant clinical research. We aimed to understand their views regarding participation in clinical research during a hypothetical influenza pandemic. Methods: International cross-sectional survey involving nationally representative samples in Belgium, Poland, Spain, Ireland, United Kingdom, Canada, Australia and New Zealand, using a scenario-based instrument during the 2017 regional influenza season. Descriptive and regression analyses were conducted. Findings: Of the 6804 respondents, 5572 (81·8%) thought pandemic-relevant research was important and 5089 (74·8 %) thought special rules should apply to make this research feasible. 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 government, therapeutic misconception and experience of ICU as a patient or carer predicted increased willingness to participate in pandemic-relevant research. Interpretation: There is 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. Funding: European Commission FP7 (grant agreement 602525); St Vincent's Anaesthesia Foundation; Cardiff University. Declaration of Interest: None declared. Ethical Approval: Ethical approval not required. The survey was administered outside of a healthcare setting by Ipsos Mori, an international ISO 20252 accredited market research company. Respondents voluntarily signed up in advance to the question panel and completion of the questionnaire indicated consent to participate. Respondents were able to refuse to participate in the questionnaire at any stage in the process. All data were processed in accordance with the UK Data Protection Act 1998.