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Achieving inclusive research priority-setting: what do people with lived experience and the public think is essential?
- Source :
- BMC Medical Ethics, Vol 22, Iss 1, Pp 1-14 (2021), BMC Medical Ethics
- Publication Year :
- 2021
- Publisher :
- Springer Science and Business Media LLC, 2021.
-
Abstract
- Background Engagement of people with lived experience and members of the public is an ethically and scientifically essential component of health research. Authentic engagement means they are involved as full partners in research projects. Yet engagement as partnership is uncommon in practice, especially during priority-setting for research projects. What is needed for agenda-setting to be shared by researchers and people with lived experience and/or members of the public (or organisations representing them)? At present, little ethical guidance exists on this matter, particularly that which has been informed by the perspectives of people with lived experience and members of the public. This article provides initial evidence about what they think are essential foundations and barriers to shared decision-making in health research priority-setting and health research more broadly. Methods An exploratory, qualitative study was conducted in 2019. 22 semi-structured interviews were performed with key informants from the UK and Australia. Results Three main types of foundations were thought to be essential to have in place before shared decision-making can occur in health research priority-setting: relational, environmental, and personal. Collectively, the three types of foundations addressed many (but not all) of the barriers to power sharing identified by interviewees. Conclusions Based on study findings, suggestions are made for what researchers, engagement practitioners, research institutions, and funders should do in their policy and practice to support meaningful engagement. Finally, key international research ethics guidelines on community engagement are considered in light of study findings.
- Subjects :
- Health (social science)
Medical philosophy. Medical ethics
Ethics, Research
Power (social and political)
03 medical and health sciences
0302 clinical medicine
Humans
030212 general & internal medicine
Sociology
Qualitative Research
Ethics
Inclusion
Engagement
Priority setting
R723-726
Community engagement
Health Priorities
business.industry
030503 health policy & services
Health Policy
Lived experience
Australia
patient and public involvement
Public relations
16. Peace & justice
Research Personnel
Issues, ethics and legal aspects
health research
Priority-setting
Philosophy of medicine
Power
General partnership
Partnership
0305 other medical science
business
Inclusion (education)
Research Article
Qualitative research
Subjects
Details
- ISSN :
- 14726939
- Volume :
- 22
- Database :
- OpenAIRE
- Journal :
- BMC Medical Ethics
- Accession number :
- edsair.doi.dedup.....26aaff6eb3b76414af40fcaea0bd7731