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

Abstract

Introduction: To 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 peoples autonomy and ensure that proxy decisions about research are based on their wishes and preferences. Objectives: To 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. Design: Cross-sectional survey Main outcomes: Acceptability and feasibility of ARP Participants: Between 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. Results: Responses 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 persons 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. Conclusions: There 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.