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

N Gobat; C C Butler; J Mollison; N A Francis; M Gal; V Harris; S A R Webb; J-P Byrne; A Watkins; P Sukumar; K Hood; A Nichol

doi:10.1016/j.puhe.2019.07.005

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

Public Health. 2019 Dec:177:80-94. doi: 10.1016/j.puhe.2019.07.005. Epub 2019 Sep 23.

Authors

N Gobat¹, C C Butler², J Mollison³, N A Francis⁴, M Gal⁴, V Harris³, S A R Webb⁵, J-P Byrne⁶, A Watkins⁴, P Sukumar⁶, K Hood⁷, A Nichol⁸

Affiliations

¹ Nuffield Department of Primary Care Health Sciences, University of Oxford, United Kingdom. Electronic address: nina.gobat@phc.ox.ac.uk.
² Nuffield Department of Primary Care Health Sciences, University of Oxford, United Kingdom.
³ Clinical Trials Unit, Nuffield Department of Primary Care Health Sciences, University of Oxford, United Kingdom.
⁴ Division of Population Medicine, School of Medicine, Cardiff University, Wales, United Kingdom.
⁵ University of Western Australia, Perth, Australia.
⁶ University College Dublin, Ireland.
⁷ Centre for Trials Research, Cardiff University, Wales, United Kingdom.
⁸ HRB Funded Irish Critical Care-Clinical Trials Network, St Vincent's University Hospital-Clinical Research Centre, University College Dublin, Ireland and the Alfred Hospital and Australian and New Zealand Intensive Care- Research Centre, Monash University, Melbourne, Australia.

PMID: 31557667
DOI: 10.1016/j.puhe.2019.07.005

Abstract

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.

Keywords: Clinical research; Influenza; Informed consent; Pandemic; Preparedness; Public involvement; Research participation.

MeSH terms

Adolescent
Adult
Aged
Biomedical Research*
Community Participation / psychology*
Cross-Sectional Studies
Female
Humans
Influenza, Human / epidemiology*
Internationality
Male
Middle Aged
Pandemics*
Public Opinion*
Young Adult