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With 2 months until I start the travel phase of my Churchill Fellowship, I visited Blenheim Palace in Oxfordshire - the birthplace of Sir Winston Churchill. My visit coincided with the start of their Christmas festive activities, including a magical illuminated light trail through the gardens. It provided me with a chance to reflect on what I hope to achieve during my Fellowship.
My Fellowship will explore the concept of advance research planning - a process to enable people to express their wishes about research participation should they lose capacity to consent in the future - though drawing on international experiences in Canada and Australia. This includes understanding how opportunities to engage in research and/or advance planning might occur for groups who may experience impaired decisional capacity at some point, understanding the legal and policy environment, engaging with international research in this area, and with researchers interested in this and related topics. You can read more about this on my Churchill Fellowship profile page.
Extending advance planning arrangements to include research preferences may support peoples’ autonomy through providing an opportunity to express their wishes about future research participation and who makes a decision about on their behalf. Addressing the ethical challenges around including people who lack capacity will minimise the burden on families, ensure research is more inclusive of this under-served group, and ultimately lead to improvements in their care. You can read about some of the research I lead in this area on the Centre for Trials Research webpage on the CONSULT project.
During January to March 2024, my Churchill Fellowship research visit will take me to Toronto, Ottawa, Montreal and Sydney. Learning from advance research planning and related experiences in Canada and Australia will help me to develop interventions to ensure that decisions about research on behalf of people who are unable to provide their own consent in the UK are preference-based, enable changes to UK policy and practice, and ultimately ensure that this group has equitable opportunities to participate in and benefit from research. That is the light at the end of this (very long distance) tunnel!