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Public Health. 2019 Sep 23;177:80-94. doi: 10.1016/j.puhe.2019.07.005. [Epub ahead of print]
What the public think about participation in medical research during an influenza pandemic: an international cross-sectional survey.
Gobat N1, Butler CC2, Mollison J3, Francis NA4, Gal M4, Harris V3, Webb SAR5, Byrne JP6, Watkins A4, Sukumar P6, Hood K7, Nichol A8.
Author information
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.
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.
Copyright ? 2019. Published by Elsevier Ltd.
KEYWORDS:
Clinical research; Influenza; Informed consent; Pandemic; Preparedness; Public involvement; Research participation
PMID: 31557667 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.
Gobat N1, Butler CC2, Mollison J3, Francis NA4, Gal M4, Harris V3, Webb SAR5, Byrne JP6, Watkins A4, Sukumar P6, Hood K7, Nichol A8.
Author information
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.
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.
Copyright ? 2019. Published by Elsevier Ltd.
KEYWORDS:
Clinical research; Influenza; Informed consent; Pandemic; Preparedness; Public involvement; Research participation
PMID: 31557667 DOI: 10.1016/j.puhe.2019.07.005