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

Abstract

AbstractIntroductionTo date, anticipatory planning in the UK has focused on supporting people who anticipate periods of impaired decisional capacity to express their wishes about their future care through processes such as advance care planning. Other countries have extended anticipatory planning to include mechanisms for people to prospectively express their preferences about research participation. Advance research planning (ARP) could extend people’s autonomy and ensure that ‘proxy’ decisions about research are based on their wishes and preferences.ObjectivesTo explore a range of public and professional stakeholders’ views about the acceptability and feasibility of planning for future research participation and identify barriers and facilitators to implementing ARP.DesignCross-sectional surveyMain outcomesAcceptability and feasibility of ARPParticipantsBetween November 2022 and March 2023, two groups of stakeholders (members of the public including people living with capacity-affecting conditions and their carers; researchers and other professionals) were invited to participate in a cross-sectional survey via multiple recruitment routes. Online questionnaires were used to capture the perspectives of the two groups.ResultsResponses from members of the public (n=277) and professionals (n=50) were analysed using descriptive statistics and content analysis. Introducing ARP in the UK was supported by 97% of public contributors and 94% of professionals, who recommended it include the person’s general wishes about research, specific types of studies if known, and who should make decisions on their behalf. Challenges include how ARP takes account of changes in individuals’ preferences or circumstances and protecting their rights and interests. Implementation barriers include the potential time, complexity, and cost involved. These may be addressed by embedding ARP in existing anticipatory planning pathways and aligning it with other research enrolment activities. Relationships and trust have a key role, including underpinning who supports the delivery of ARP, how they are trained, and when it is undertaken.ConclusionsThere are high levels of support for implementing ARP in the UK. Further research should explore practical barriers and stakeholder concerns and identify any unintended consequences. ARP interventions should be developed alongside training and other resources. Activities should focus on public awareness campaigns, and engaging policymakers and other stakeholders.Strengths and limitations of this studyThis is the first exploration of the acceptability and feasibility of advance research planning in the UKQuestions were based on previous similar surveys conducted in other countries which ensured prior validation and enables international comparisonThe study included a wide range of members of the public including people living with conditions that may affect decision-making in the future, and professionals including researchers, research ethics committee members, and healthcare practitionersThe non-random selection of participants and inability to track non-responders may have resulted in potential participation biasParticipants were predominantly white and had some prior involvement in research, therefore their views may not be representative of more diverse groups or those with less experience of research