Public and professionals’ perceptions and experiences of advance planning for research: a scoping review

<title>Abstract</title> <p>Background With a global ageing population and rising prevalence of conditions associated with cognitive impairment, there is an increasing focus on supporting people to express their preferences ahead of any loss of decision-making capacity. This includes a growing interest in the role of advance research planning to enable people to express their wishes about future research participation in the event they lose capacity to consent. Advance research planning, which may include drafting an advance research directive (ARD), could ensure that participation decisions are more closely aligned with the person’s values and preferences and may help address the ethical and legal complexities surrounding research involving adults lacking capacity to consent. However, despite three decades of research and increasing statutory recognition of ARDs, it has yet to be translated into practice. This scoping review aimed to investigate the advance research planning implementation gap through exploring public and professional stakeholders’ perceptions and experiences, and evidence around the effectiveness of advance research planning interventions and strategies. Methods We searched databases (December 2024) including MEDLINE, Embase, and PsychInfo to identify studies exploring public and professional stakeholders’ perceptions and experiences of advance research planning, including any interventions or strategies and the outcomes assessed. The findings were mapped against the theoretical framework of acceptability to facilitate future implementation. Results Thirty-three publications were identified for inclusion, published between 2002-2024, primarily in North America, Australia and UK, including a broad range of populations and settings. Five main themes were identified: 1) heterogeneity of concepts and activities across the advance research planning continuum; 2) acceptability of advance research planning; 3) feasibility of advance research planning; 4) effectiveness of advance research planning interventions; and 5) areas for future research. We identified a number of key conceptual uncertainties, including who it is intended to benefit and how, and regulatory uncertainties regarding the status of ARDs. Conclusion The findings highlight key implementation barriers, including the need for support for all groups involved. There is also a need to close the gaps between legislation, policy, and practice. The findings support a staged implementation process, tailored to take account of differences in international jurisdictions and cultures.</p>