AuthorDr Victoria Shepherd Archives
March 2024
Categories |
Back to Blog
COLOUR12/2/2024 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!)
Back to Blog
LEGACIES4/2/2024 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) |