Planning ahead: communicating preferences about research through Advance Research Planning
Enabling people to express their preferences about research should they lose capacity to consent
I am a senior research fellow and nurse based at Cardiff University. My research focuses on how we can best include people in research when they are unable to provide their own consent to take part.
When an individual is unable to provide consent, we ask someone who knows them well to decide whether they should take part. This should be based on what the person's wishes would be. My research found that families often do not know what that person would want and many experience an emotional and decisional burden. This contributes to people with impaired capacity commonly being excluded from research. In the UK, there are no mechanisms for individuals to discuss and document their preferences about research should they be unable to communicate their wishes.
My Fellowship investigates enabling people to express their preferences about taking part in research should they lose capacity, and who they would like to make decisions on their behalf. I hope that by learning from international experiences I can introduce advance research planning in the UK and ensure that decisions better reflect an individual's wishes, reduce the burden experienced by families and support greater inclusion in research.
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