What the public think about participation in medical research during an influenza pandemic: an international cross-sectional survey.
Identifieur interne : 000091 ( PubMed/Corpus ); précédent : 000090; suivant : 000092What the public think about participation in medical research during an influenza pandemic: an international cross-sectional survey.
Auteurs : 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. NicholSource :
- Public health [ 1476-5616 ] ; 2019.
English descriptors
- KwdEn :
- MESH :
- epidemiology : Influenza, Human.
- psychology : Community Participation.
- Adolescent, Adult, Aged, Biomedical Research, Cross-Sectional Studies, Female, Humans, Internationality, Male, Middle Aged, Pandemics, Public Opinion, Young Adult.
Abstract
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.
DOI: 10.1016/j.puhe.2019.07.005
PubMed: 31557667
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Mollison</name><affiliation><nlm:affiliation>Clinical Trials Unit, Nuffield Department of Primary Care Health Sciences, University of Oxford, United Kingdom.</nlm:affiliation></affiliation></author><author><name sortKey="Francis, N A" sort="Francis, N A" uniqKey="Francis N" first="N A" last="Francis">N A Francis</name><affiliation><nlm:affiliation>Division of Population Medicine, School of Medicine, Cardiff University, Wales, United Kingdom.</nlm:affiliation></affiliation></author><author><name sortKey="Gal, M" sort="Gal, M" uniqKey="Gal M" first="M" last="Gal">M. Gal</name><affiliation><nlm:affiliation>Division of Population Medicine, School of Medicine, Cardiff University, Wales, United Kingdom.</nlm:affiliation></affiliation></author><author><name sortKey="Harris, V" sort="Harris, V" uniqKey="Harris V" first="V" last="Harris">V. Harris</name><affiliation><nlm:affiliation>Clinical Trials Unit, Nuffield Department of Primary Care Health Sciences, University of Oxford, United Kingdom.</nlm:affiliation></affiliation></author><author><name sortKey="Webb, S A R" sort="Webb, S A R" uniqKey="Webb S" first="S A R" last="Webb">S A R. Webb</name><affiliation><nlm:affiliation>University of Western Australia, Perth, Australia.</nlm:affiliation></affiliation></author><author><name sortKey="Byrne, J P" sort="Byrne, J P" uniqKey="Byrne J" first="J-P" last="Byrne">J-P Byrne</name><affiliation><nlm:affiliation>University College Dublin, Ireland.</nlm:affiliation></affiliation></author><author><name sortKey="Watkins, A" sort="Watkins, A" uniqKey="Watkins A" first="A" last="Watkins">A. Watkins</name><affiliation><nlm:affiliation>Division of Population Medicine, School of Medicine, Cardiff University, Wales, United Kingdom.</nlm:affiliation></affiliation></author><author><name sortKey="Sukumar, P" sort="Sukumar, P" uniqKey="Sukumar P" first="P" last="Sukumar">P. Sukumar</name><affiliation><nlm:affiliation>University College Dublin, Ireland.</nlm:affiliation></affiliation></author><author><name sortKey="Hood, K" sort="Hood, K" uniqKey="Hood K" first="K" last="Hood">K. Hood</name><affiliation><nlm:affiliation>Centre for Trials Research, Cardiff University, Wales, United Kingdom.</nlm:affiliation></affiliation></author><author><name sortKey="Nichol, A" sort="Nichol, A" uniqKey="Nichol A" first="A" last="Nichol">A. Nichol</name><affiliation><nlm:affiliation>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.</nlm:affiliation></affiliation></author></titleStmt><publicationStmt><idno type="wicri:source">PubMed</idno><date when="2019">2019</date><idno type="RBID">pubmed:31557667</idno><idno type="pmid">31557667</idno><idno type="doi">10.1016/j.puhe.2019.07.005</idno><idno type="wicri:Area/PubMed/Corpus">000091</idno><idno type="wicri:explorRef" wicri:stream="PubMed" wicri:step="Corpus" wicri:corpus="PubMed">000091</idno></publicationStmt><sourceDesc><biblStruct><analytic><title xml:lang="en">What the public think about participation in medical research during an influenza pandemic: an international cross-sectional survey.</title><author><name sortKey="Gobat, N" sort="Gobat, N" uniqKey="Gobat N" first="N" last="Gobat">N. Gobat</name><affiliation><nlm:affiliation>Nuffield Department of Primary Care Health Sciences, University of Oxford, United Kingdom. Electronic address: nina.gobat@phc.ox.ac.uk.</nlm:affiliation></affiliation></author><author><name sortKey="Butler, C C" sort="Butler, C C" uniqKey="Butler C" first="C C" last="Butler">C C Butler</name><affiliation><nlm:affiliation>Nuffield Department of Primary Care Health Sciences, University of Oxford, United Kingdom.</nlm:affiliation></affiliation></author><author><name sortKey="Mollison, J" sort="Mollison, J" uniqKey="Mollison J" first="J" last="Mollison">J. Mollison</name><affiliation><nlm:affiliation>Clinical Trials Unit, Nuffield Department of Primary Care Health Sciences, University of Oxford, United Kingdom.</nlm:affiliation></affiliation></author><author><name sortKey="Francis, N A" sort="Francis, N A" uniqKey="Francis N" first="N A" last="Francis">N A Francis</name><affiliation><nlm:affiliation>Division of Population Medicine, School of Medicine, Cardiff University, Wales, United Kingdom.</nlm:affiliation></affiliation></author><author><name sortKey="Gal, M" sort="Gal, M" uniqKey="Gal M" first="M" last="Gal">M. Gal</name><affiliation><nlm:affiliation>Division of Population Medicine, School of Medicine, Cardiff University, Wales, United Kingdom.</nlm:affiliation></affiliation></author><author><name sortKey="Harris, V" sort="Harris, V" uniqKey="Harris V" first="V" last="Harris">V. Harris</name><affiliation><nlm:affiliation>Clinical Trials Unit, Nuffield Department of Primary Care Health Sciences, University of Oxford, United Kingdom.</nlm:affiliation></affiliation></author><author><name sortKey="Webb, S A R" sort="Webb, S A R" uniqKey="Webb S" first="S A R" last="Webb">S A R. Webb</name><affiliation><nlm:affiliation>University of Western Australia, Perth, Australia.</nlm:affiliation></affiliation></author><author><name sortKey="Byrne, J P" sort="Byrne, J P" uniqKey="Byrne J" first="J-P" last="Byrne">J-P Byrne</name><affiliation><nlm:affiliation>University College Dublin, Ireland.</nlm:affiliation></affiliation></author><author><name sortKey="Watkins, A" sort="Watkins, A" uniqKey="Watkins A" first="A" last="Watkins">A. Watkins</name><affiliation><nlm:affiliation>Division of Population Medicine, School of Medicine, Cardiff University, Wales, United Kingdom.</nlm:affiliation></affiliation></author><author><name sortKey="Sukumar, P" sort="Sukumar, P" uniqKey="Sukumar P" first="P" last="Sukumar">P. Sukumar</name><affiliation><nlm:affiliation>University College Dublin, Ireland.</nlm:affiliation></affiliation></author><author><name sortKey="Hood, K" sort="Hood, K" uniqKey="Hood K" first="K" last="Hood">K. Hood</name><affiliation><nlm:affiliation>Centre for Trials Research, Cardiff University, Wales, United Kingdom.</nlm:affiliation></affiliation></author><author><name sortKey="Nichol, A" sort="Nichol, A" uniqKey="Nichol A" first="A" last="Nichol">A. Nichol</name><affiliation><nlm:affiliation>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.</nlm:affiliation></affiliation></author></analytic><series><title level="j">Public health</title><idno type="eISSN">1476-5616</idno><imprint><date when="2019" type="published">2019</date></imprint></series></biblStruct></sourceDesc></fileDesc><profileDesc><textClass><keywords scheme="KwdEn" xml:lang="en"><term>Adolescent</term><term>Adult</term><term>Aged</term><term>Biomedical Research</term><term>Community Participation (psychology)</term><term>Cross-Sectional Studies</term><term>Female</term><term>Humans</term><term>Influenza, Human (epidemiology)</term><term>Internationality</term><term>Male</term><term>Middle Aged</term><term>Pandemics</term><term>Public Opinion</term><term>Young Adult</term></keywords><keywords scheme="MESH" qualifier="epidemiology" xml:lang="en"><term>Influenza, Human</term></keywords><keywords scheme="MESH" qualifier="psychology" xml:lang="en"><term>Community Participation</term></keywords><keywords scheme="MESH" xml:lang="en"><term>Adolescent</term><term>Adult</term><term>Aged</term><term>Biomedical Research</term><term>Cross-Sectional Studies</term><term>Female</term><term>Humans</term><term>Internationality</term><term>Male</term><term>Middle Aged</term><term>Pandemics</term><term>Public Opinion</term><term>Young Adult</term></keywords></textClass></profileDesc></teiHeader><front><div type="abstract" xml:lang="en">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.</div></front></TEI><pubmed><MedlineCitation Status="MEDLINE" IndexingMethod="Curated" Owner="NLM"><PMID Version="1">31557667</PMID><DateCompleted><Year>2020</Year><Month>02</Month><Day>05</Day></DateCompleted><DateRevised><Year>2020</Year><Month>02</Month><Day>05</Day></DateRevised><Article PubModel="Print-Electronic"><Journal><ISSN IssnType="Electronic">1476-5616</ISSN><JournalIssue CitedMedium="Internet"><Volume>177</Volume><PubDate><Year>2019</Year><Month>Dec</Month></PubDate></JournalIssue><Title>Public health</Title><ISOAbbreviation>Public Health</ISOAbbreviation></Journal><ArticleTitle>What the public think about participation in medical research during an influenza pandemic: an international cross-sectional survey.</ArticleTitle><Pagination><MedlinePgn>80-94</MedlinePgn></Pagination><ELocationID EIdType="pii" ValidYN="Y">S0033-3506(19)30220-3</ELocationID><ELocationID EIdType="doi" ValidYN="Y">10.1016/j.puhe.2019.07.005</ELocationID><Abstract><AbstractText Label="OBJECTIVES" NlmCategory="OBJECTIVE">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.</AbstractText><AbstractText Label="STUDY DESIGN" NlmCategory="METHODS">This is an international cross-sectional survey.</AbstractText><AbstractText Label="METHODS" NlmCategory="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.</AbstractText><AbstractText Label="RESULTS" NlmCategory="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.</AbstractText><AbstractText Label="CONCLUSIONS" NlmCategory="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.</AbstractText><CopyrightInformation>Copyright © 2019. Published by Elsevier Ltd.</CopyrightInformation></Abstract><AuthorList CompleteYN="Y"><Author ValidYN="Y"><LastName>Gobat</LastName><ForeName>N</ForeName><Initials>N</Initials><AffiliationInfo><Affiliation>Nuffield Department of Primary Care Health Sciences, University of Oxford, United Kingdom. Electronic address: nina.gobat@phc.ox.ac.uk.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Butler</LastName><ForeName>C C</ForeName><Initials>CC</Initials><AffiliationInfo><Affiliation>Nuffield Department of Primary Care Health Sciences, University of Oxford, United Kingdom.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Mollison</LastName><ForeName>J</ForeName><Initials>J</Initials><AffiliationInfo><Affiliation>Clinical Trials Unit, Nuffield Department of Primary Care Health Sciences, University of Oxford, United Kingdom.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Francis</LastName><ForeName>N A</ForeName><Initials>NA</Initials><AffiliationInfo><Affiliation>Division of Population Medicine, School of Medicine, Cardiff University, Wales, United Kingdom.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Gal</LastName><ForeName>M</ForeName><Initials>M</Initials><AffiliationInfo><Affiliation>Division of Population Medicine, School of Medicine, Cardiff University, Wales, United Kingdom.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Harris</LastName><ForeName>V</ForeName><Initials>V</Initials><AffiliationInfo><Affiliation>Clinical Trials Unit, Nuffield Department of Primary Care Health Sciences, University of Oxford, United Kingdom.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Webb</LastName><ForeName>S A R</ForeName><Initials>SAR</Initials><AffiliationInfo><Affiliation>University of Western Australia, Perth, Australia.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Byrne</LastName><ForeName>J-P</ForeName><Initials>JP</Initials><AffiliationInfo><Affiliation>University College Dublin, Ireland.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Watkins</LastName><ForeName>A</ForeName><Initials>A</Initials><AffiliationInfo><Affiliation>Division of Population Medicine, School of Medicine, Cardiff University, Wales, United Kingdom.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Sukumar</LastName><ForeName>P</ForeName><Initials>P</Initials><AffiliationInfo><Affiliation>University College Dublin, Ireland.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Hood</LastName><ForeName>K</ForeName><Initials>K</Initials><AffiliationInfo><Affiliation>Centre for Trials Research, Cardiff University, Wales, United Kingdom.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Nichol</LastName><ForeName>A</ForeName><Initials>A</Initials><AffiliationInfo><Affiliation>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.</Affiliation></AffiliationInfo></Author></AuthorList><Language>eng</Language><PublicationTypeList><PublicationType UI="D016428">Journal Article</PublicationType></PublicationTypeList><ArticleDate DateType="Electronic"><Year>2019</Year><Month>09</Month><Day>23</Day></ArticleDate></Article><MedlineJournalInfo><Country>Netherlands</Country><MedlineTA>Public Health</MedlineTA><NlmUniqueID>0376507</NlmUniqueID><ISSNLinking>0033-3506</ISSNLinking></MedlineJournalInfo><CitationSubset>IM</CitationSubset><MeshHeadingList><MeshHeading><DescriptorName UI="D000293" MajorTopicYN="N">Adolescent</DescriptorName></MeshHeading><MeshHeading><DescriptorName UI="D000328" MajorTopicYN="N">Adult</DescriptorName></MeshHeading><MeshHeading><DescriptorName UI="D000368" MajorTopicYN="N">Aged</DescriptorName></MeshHeading><MeshHeading><DescriptorName UI="D035843" MajorTopicYN="Y">Biomedical Research</DescriptorName></MeshHeading><MeshHeading><DescriptorName UI="D003256" MajorTopicYN="N">Community Participation</DescriptorName><QualifierName UI="Q000523" MajorTopicYN="Y">psychology</QualifierName></MeshHeading><MeshHeading><DescriptorName UI="D003430" MajorTopicYN="N">Cross-Sectional Studies</DescriptorName></MeshHeading><MeshHeading><DescriptorName UI="D005260" MajorTopicYN="N">Female</DescriptorName></MeshHeading><MeshHeading><DescriptorName UI="D006801" MajorTopicYN="N">Humans</DescriptorName></MeshHeading><MeshHeading><DescriptorName UI="D007251" MajorTopicYN="N">Influenza, Human</DescriptorName><QualifierName UI="Q000453" MajorTopicYN="Y">epidemiology</QualifierName></MeshHeading><MeshHeading><DescriptorName UI="D038622" MajorTopicYN="N">Internationality</DescriptorName></MeshHeading><MeshHeading><DescriptorName UI="D008297" MajorTopicYN="N">Male</DescriptorName></MeshHeading><MeshHeading><DescriptorName UI="D008875" MajorTopicYN="N">Middle Aged</DescriptorName></MeshHeading><MeshHeading><DescriptorName UI="D058873" MajorTopicYN="Y">Pandemics</DescriptorName></MeshHeading><MeshHeading><DescriptorName UI="D011639" MajorTopicYN="Y">Public Opinion</DescriptorName></MeshHeading><MeshHeading><DescriptorName UI="D055815" MajorTopicYN="N">Young Adult</DescriptorName></MeshHeading></MeshHeadingList><KeywordList Owner="NOTNLM"><Keyword MajorTopicYN="N">Clinical research</Keyword><Keyword MajorTopicYN="N">Influenza</Keyword><Keyword MajorTopicYN="N">Informed consent</Keyword><Keyword MajorTopicYN="N">Pandemic</Keyword><Keyword MajorTopicYN="N">Preparedness</Keyword><Keyword MajorTopicYN="N">Public involvement</Keyword><Keyword MajorTopicYN="N">Research participation</Keyword></KeywordList></MedlineCitation><PubmedData><History><PubMedPubDate PubStatus="received"><Year>2019</Year><Month>04</Month><Day>04</Day></PubMedPubDate><PubMedPubDate 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