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Fitting Medical Research into Advance Care Planning

Sunday, May 14th, 2023

How many of you have spoken with your loved ones about what type of care you would like to receive if you became seriously ill or injured or unable to say what you want? Advance care planning involves arranging with friends and family about what care you would like to receive, if you lost your ability to make decisions. It typically involves choices around personal or health care, but what about if it included whether to participate in research? Advance planning for research participation could help with the underrepresentation of people with dementia in study trials.

Small group conversations

An Australian team of researchers, keen to address this underrepresentation, held an online workshop with fifteen stakeholders with either lived experience, or research experience, with dementia[1]. Breakout groups discussed how to raise awareness of advance planning for research, the ethical and legal aspects that this might entail, plus the documents that would be required to support the process.

Multi-faceted recommendations

The workshop findings were developed into recommendations. These included to introduce the idea of advance research planning to individuals with dementia via large, trusted organisations and consumer advocacy groups – after diagnosis and not at the time of diagnosis. Another suggestion was to increase opportunities for inclusion in research rather than over-protective exclusion, by training relevant professionals about consent. Like any advance care planning, all workshop attendees agreed that the making of a research directive be voluntary, well-informed, and person-centred. The findings also spoke to the importance of developing user-friendly materials to support the process, whilst recognising the absence of uniform legal rules about such a directive.

Research opportunities for all

Older people, people with early cognitive impairment, or people approaching the end of their life might benefit from an advance care plan. Research participation can have benefits and drawbacks, and the decision of whether to join a study is often nuanced. The research team has developed resources to support people considering an advance research directive[2]. Whilst this study was small and only focused on people with dementia, it highlighted a possible avenue regarding the important need to increase access to research for people with reduced decision-making capacity.