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I am well over halfway through this visit to Canada for the first leg of my Fellowship exploring advance research planning and I am so grateful to all those who have so generously their time to speak to me, listen/watch seminars I have been presenting in, ask insightful questions, and link me to other people – their engagement with the topic has been overwhelmingly useful (and hopefully of interest to them)! This has included people working in fields such as bioethics, law, social sciences, clinical trials, advance care planning, and inclusive research, and from a range of clinical specialties and across care settings, spanning from Toronto to Kingston, and then on to Ottawa. I cannot thank them enough!
Through these discussions in coffee shops, meeting rooms, offices and lecture theatres I have heard about peoples’ personal and professional experiences, some related work already happening and planned, and about different networks and collaborations who have shared interests in this area. I have also heard a lot about the complexities and challenges that are often encountered – and about strategies and activities that may help address them. Amongst all of this has been the core message that supporting people involved in what can be very difficult circumstances is key, and of the importance of communication. This includes researchers communicating with participants, their families, and research ethics committees, and encouraging people to speak to those close to them about their values, wishes and preferences (including about research) in a way that prepares them to make decisions on their behalf should they be in a position where they are unable to communicate for themselves.
It has also shown me the value of actually meeting people and having conversations, whilst spending time learning more about the cultural and societal factors (and the climate and geography) that influence their experiences, in a way that just cannot be gained through online meetings or via email exchanges. The best way of describing it is like seeing something in colour rather than in greyscale – it brings richness and life to things that might otherwise appear one dimensional. Given the complexity of the issues I’m exploring, seeing the issue from all sides and in full colour is certainly helping my understanding, and hopefully will help me to bring some clarity to some of these issues by sharing what I’ve learnt.
(The photo above is from a living wall in the main atrium of the Social Sciences Building at the University of Ottawa which contains 2,000 plants from 12 different species – what the image isn't able to capture is the sounds of water gently trickling through it!)
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Towards the end of my first week in Canada and following a busy few days of meetings and presentations (more to come on those in a following blog post), I took some time out to visit the ROM (Royal Ontario Museum) in Toronto. I was particularly keen to visit the First Peoples Gallery to learn more about the experiences of Indigenous people in Canada, and see examples of First Peoples art and cultural heritage. The gallery contains exhibitions of ancestral objects which tell rich stories of identity, traditions and beliefs from both the past and the present. It also provides a very moving insight into the settler-colonial impacts on the traditions and lives of Indigenous people. The clothing, musical and ceremonial items on display are striking, as are the personal stories told by Mohawk, Nisga'a, and Anishinaabeg and other First Peoples through art. Amongst all that I learnt and saw during my short visit, three particular themes resonated with the purpose of this fellowship and my wider work.
Firstly, since the gallery opened, Indigenous people have advocated for a greater role in how museums represent their communities which sees a shift from having an advisory role to having greater authority in ensuring there is a more accurate representation of First Peoples. This reflects a similar shift in public involvement in research that seeks to ensure that patients and members of the public are not just consulted during the design and conduct of research but are actively involved in deciding which research is prioritised and funded and have the opportunity to be partners in research through co-production and co-researcher approaches.
Secondly, I learnt that the Truth and Reconciliation Commission has a particular focus on Indigenous health and addressing the gap between health outcomes due to the inequalities these communities continue to experience. The First Peoples Gallery highlights the important role of physical and spiritual Indigenous healing practices and beliefs. This includes the botanical knowledge held by Indigenous people and traditional beliefs in the ’doctrine of signatures’ medicinal properties of plants which contrasts with Western science and microbiological composition of plants. This resonated with the importance of addressing health and research inequalities that many groups experience, and the need to align care and treatment options (and opportunities for participating in research) with the values and preferences that are meaningful to the person.
Lastly, there is a strong emphasis in the exhibition on legacies and the use of art, oral histories and retelling of stories that keeps people’s values, ethics and ways of thinking alive. This reminded me of the intrinsic value we place in ‘knowing’ and relationships, and also of the concept of legacy – that we are not just interested in benefiting ourselves but also improving and enriching the lives of those yet to come.
This exhibition, thanks to the Indigenous leaders and communities who are helping to create and shape it, certainly provided me with lots to think about and reminded me of the richness and diversity of experiences and what this tells us about the future.
“We need these traditions, not only to know who we are, but to know who we can become” -Margaret Nelson, President, Alaska Native Heritage Center, 2001 (ROM)
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As the first day of my visit to Canada starts, the view from my window shows the sun lighting up the Toronto skyline. I last visited Toronto around Christmas 2019 which seems a lifetime ago - mostly because of the COVID pandemic which hit shortly afterwards. Many of the sights and landmarks in Toronto seem familiar - but also different (they were also covered in snow last time I saw them) and I am looking forward to exploring them again over the next week.
I also have my first meetings with researchers based in and around Toronto and am very much looking forward to discussing issues around ethics, consent, inclusion of under-served groups, and how best to ensure that research actually benefits the populations who are most in need of evidence-based care. I am looking forward to understanding more about research governance in Canada and whether issues that arise around capacity and consent in the UK are experienced (or not) in the provinces and territories here. This all offers an opportunity to explore whether advance research planning may help bridge the gap between arrangements for people to make their wishes known about their future care and treatment, and people being able to express their wishes about future research participation.
I am also looking forward to a visit to Kingston in the coming days, and seeing the place where "history and innovation thrive". It will also be an opportunity to see a snowier skyline!
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As January approaches its end, and after what feels like a year of waiting, I have arrived in Canada for the first leg of my Churchill Fellowship research visits. One of my first sights on arrival in a chilly Toronto was the Great Hall at the heart of Union Station. It is currently part way through restoration works, but its Beaux-Arts architectural features show how it was intended to be an important part of the 'new vision' for Toronto when it was built after the Great Fire in 1904. The vaulted ceiling is particularly striking, with the provincial flags of Canada lining the wall below. The flags reminded me about one of the reasons for visiting Canada as part of my Churchill Fellowship exploring advance research planning - which is that Canada's legal system with a combination of common law and civil law provides an interesting perspective on health law, alongside its universal health care system, and the differences between provinces and territories in both health and law.
My visit to Canada will include two neighbouring provinces - Ontario and Quebec - and I am fortunate to have the opportunity to talk to experts in health law, bioethics, clinical trials, advance care planning, clinical care and social work in both. I am looking forward to hearing more about the wider context in which Canadian healthcare and research is organised and delivered, as well as from researchers who have explored advance research planning, in order to understand more about how advance research planning might (or might not) be successfully implemented in the UK.
I am immensely grateful for their warm welcome - even if the weather is fairly chilly!
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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!