Exploring New Horizons In Big Sky Countries – Churchill Fellowship Visits To Canada And Australia

From January to April this year I have had the amazing experience of visiting Canada and Australia as part of a Churchill Fellowship. The aim of Churchill Fellowships are to enable people to undertake international learning about their particular topic and bring that knowledge back to the UK to lead the change in that area in the UK. The topic of my Fellowship was to explore international experiences of advance planning for research participation, building on the CONSULT-ADVANCE Study as part of the CONSULT programme I lead in the UK.

Advance planning for research participation

As I have written about previously in this blog, advance research planning is a process that enables people to think, discuss, and document their wishes about taking part in research in the future if they are unable to provide their own consent. It may include making an advance research directive and naming trusted people to be involved in decisions about research participation.

Advance planning for research may help ensure that decisions about research are (more closely) based on the person’s preferences and wishes prior to loss of capacity, could reduce the decisional burden experienced by alternative decision-makers like family members, and could better align preferences/decisions about research and those about the person’s care and treatment.

Aim of the Churchill Fellowship

The UK has yet to introduce advance planning for research participation, despite having well established processes for advance care planning, power of attorney, and other forms of advance planning. Other countries have started introducing processes for advance research planning, but they are not widely used.

The aims of my Churchill Fellowship were to explore how other countries have embedded advance research planning into care and research pathways, how and why uptake varies between countries, and the policy and legislative environments that led to its introduction. I chose Canada and Australia for the international learning phase of my Fellowship as they have both been the location for recent research studies exploring aspects of advance planning for research.

A snowy research visit to Canada

The first leg of my travels was to the provinces of Ontario (Toronto and Ottawa) and Québec (Montréal) which have different legal frameworks covering aspects of legal planning and research. I was very fortunate to meet researchers from a number of different universities and disciplines, as well as leads from organisations supporting advance care planning and inclusive research, amongst others. I also presented at seminars at Queens, Kingston, and Ottawa universities, which brought opportunities to learn from wider discussions with broader audiences.

Although it was considered one of the warmest Winters on record during my visit in January and February, it was still a chilly -7 degrees at times! It also coincided with the Winterlude festival which is held in the centre of Ottawa and was a lovely distraction from my work there

Connecting and learning in the Australian sunshine

The second leg of my international travel was a research visit to Sydney. Again, I was fortunate to meet with researchers from a number of universities and research networks, as well as consumer representatives and others with lived experience. I presented at seminars at University of Sydney and the Nursing Research Institute at St Vincent’s Hospital amongst others.

My visit culminated in a symposium at the University of Technology Sydney. Hosted by Prof Nola Ries, this event brought together researchers, clinicians, and other stakeholders with the aim of developing collaborations to build the evidence for strategies to explore advance research planning with priority populations. It was also a good opportunity to connect some of the people I had met during my time there.

Next steps

Once the jet lag has settled, the plan is to draw together the findings from my visit in a report which will include a series of recommendations. What is clear is that this is an international and interdisciplinary issue and that whilst many countries do have various provisions for advance research planning, there are clear gaps between legislation and policy and practice. There are opportunities for the UK to learn from these international experiences.

What is also clear is that one size doesn’t fit all – the historical, cultural, and legal contexts vary between countries and so the arrangements for advance planning for research will also need to do so. The contextual importance of wider inequalities was also a very clear message from my visits. In both Canada and Australian I spent time learning more about the experiences of Indigenous people and First Nations and the health inequalities that many of these groups experience. This included visiting exhibitions of Indigenous peoples’ art and cultural heritage at the Royal Ontario Museum and the Australian Museum.

Advance research planning arrangements will need to be culturally sensitive to these issues and should be accessible to groups currently under-served by research in order to avoid further widening these inequalities.

In the meantime, I recorded some of my experiences in a blog series on the CONSULT website. You can read more about the findings from the CONSULT-ADVANCE Study exploring the acceptability and feasibility of advance research planning in the UK through the results of this survey and a follow-on interview study.