If a participant lacks capacity to consent to a research study, a consultee or legal representative is asked to advise researchers about the person’s wishes and preferences - their ‘presumed will’ (see Consent and consultation page). This can be challenging for consultees and legal representatives as they may not know what the person's wishes would be.
In healthcare, people anticipating future periods of incapacity are encouraged to make their wishes known ahead of time. This can include putting power of attorney arrangements in place and discussing their preferences about their future care and treatment through advance care planning.
A similar process could be used to encourage people to make their wishes known about being involved in research during future periods of incapacity. This is termed 'advance research planning' which is defined as:
In healthcare, people anticipating future periods of incapacity are encouraged to make their wishes known ahead of time. This can include putting power of attorney arrangements in place and discussing their preferences about their future care and treatment through advance care planning.
A similar process could be used to encourage people to make their wishes known about being involved in research during future periods of incapacity. This is termed 'advance research planning' which is defined as:
Definition of advance research planning from Ries et al 2022 https://doi.org/10.1111/ajag.13161
Advance research planning may help to ensure that decisions about research participation made by consultees and legal representatives are based on the person’s wishes and preferences. It may help to prepare consultees and legal representatives to make these decisions and increase their confidence in making decisions, and so reduce the decisional burden they often experience.
The CONSULT-ADVANCE Study has explored the acceptability and feasibility of introducing advance research planning in the UK, and international experiences of advance research planning have also been explored through Churchill Fellowship research visits to Canada and Australia. You can find out more by following the links below:
Opportunities to introduce the topic of advance research planning could occur in a number of situations, for example when recruiting participants to research studies or signing up to research registries, during advance care planning conversations, or when putting lasting power of attorney arrangements in place. Potential opportunities are outlined in the diagram below:
Diagram of opportunities for advance research planning from Shepherd et al 2024 https://doi.org/10.1186/s12910-024-01081-5
The next stage of the project is to develop interventions and resources to support advance research planning with priority populations.
Research to explore advance research planning is also underway in Australia led by Prof Nola Ries at University of Technology Sydney (UTS). A symposium was held at UTS in 2024 to bring together researchers, clinicians, advocates, and representatives from stakeholder organisations with shared interests in research participation for people with cognitive impairment to help set the international research agenda. A summary of the symposium and future plans are available in the Churchill Fellowship report.
If you are interested in joining an international research network on advance research planning, please use the Contact page to get in touch.