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Planning ahead for research participation: survey of public and professional stakeholders' view about the acceptability and feasibility of advance research planning

Shepherd, Victoria ORCID:, Hood, Kerenza ORCID: and Wood, Fiona ORCID: 2023. Planning ahead for research participation: survey of public and professional stakeholders' view about the acceptability and feasibility of advance research planning. BMC Medical Ethics 24 , 70. 10.1186/s12910-023-00948-3

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Background Anticipatory planning in the UK focuses on supporting people who anticipate periods of impaired capacity to express their wishes about future care through processes such as advance care planning. Other countries have extended anticipatory planning to include processes for people to prospectively express their preferences about research participation. Advance research planning (ARP) is thought to extend autonomy and ensure that ‘proxy’ decisions about research are based on their wishes and preferences. Methods A cross-sectional survey was conducted with two stakeholder groups (members of the public including people living with capacity-affecting conditions and family members; researchers and other professionals) who were recruited via research registries and other routes. Online questionnaires were used to capture the perspectives of the two groups. Responses were analysed using descriptive statistics and content analysis. Results A total of 327 participants (members of the public n = 277, professionals n = 50) completed the survey (November 2022 - March 2023). ARP was supported by 97% of public contributors and 94% of professionals. Participants thought that ARP should include the person’s general wishes about research, specific types of studies, and who should make decisions on their behalf. They identified a number of challenges, including how ARP could take account of changes in individuals’ preferences or circumstances whilst protecting their rights and interests. Implementation barriers included the potential time, complexity, and cost involved. These could be addressed by embedding ARP in existing anticipatory planning pathways and aligning it with other research enrolment activities. Relationships and trust played a key role, including underpinning who should support the delivery of ARP, how they are trained, and when it is undertaken. Conclusions There were high levels of support for introducing ARP in the UK. Further research should explore practical barriers and stakeholder concerns and identify any unintended consequences. Future activities should include developing ARP interventions alongside training and other resources, and also focus on public awareness campaigns, and engaging policymakers and other stakeholders.

Item Type: Article
Date Type: Published Online
Status: Published
Schools: Medicine
Centre for Trials Research (CNTRR)
Prime Centre Wales (PRIME)
Publisher: BioMed Central
Funders: NIHR Advanced Fellowship (CONSULT) HELD BY vs and funded by the Welsh Government through the Health and Care Research Wales (NIHR-FS(A)-2021)
Date of First Compliant Deposit: 8 September 2023
Date of Acceptance: 29 August 2023
Last Modified: 11 Sep 2023 15:33

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