My research visit to Sydney as part of my Churchill Fellowship is sadly coming to an end. One of the last events was a symposium at the University of Technology Sydney to bring together a wide ranging group of people, from a number of institutions in News South Wales and beyond, to explore advance planning for research. The topic was developing evidence for practice, and the aim was to start developing the international research agenda. It was also an opportunity to start drawing together the themes of what I have learned during my fellowship to date, and to start writing the 'story' which will form the basis of my final report to be drafted over the next couple of months.

It was also an opportunity to reflect on the many stories that have been shared with me during my travels. ​Life stories have  been a common thread in the conversations. Many of them personal, some professional, and quite a few are a combination of both. All of them a privilege to hear. 

It was also echoed in the Gadigal shields which can be seen in a number of locations, including the nearby Australian Museum (shown in the photo above) and at UTS itself. These shields are a symbol of respect to the Gadigal people, and their traditional ownership of the land on which Sydney is built. This respect is also shown in the Acknowledgement of Country that is delivered at the start of meetings and events (and also in Canada), including the acknowledgment that they are the traditional custodians of knowledge for this land on which the meeting is taking place.

I was also reminded of life stories when I checked the news back home and coincidentally saw this story on the BBC. Apparently, on this day 155 years ago, a Welshman called Joseph Jenkins set off from Tregaron for Australia where he later became the inspiration for the song Waltzing Matilda as the 'Jolly Swagman'. His diaries, which cover 50 years of his life and were lost for 80 years before being rediscovered in his grandson's attic, have been a set text for high school pupils since 1978 and run to 25 volumes! His story includes struggles with his mental health, and some progressive views during his time in Australia (he believed that the land had been stolen from First Nations people for example) alongside some less favourable views including about women (and his wife in particular). The BBC piece says that the Welsh Swagman Drinking Fountain at a railway station here has a plaque with a quote from his diary which reads 'Through this [diary] I am building my own monument'.

This is a reminder that we each have our story and, while not all of it might paint us in a good light, it serves as our 'own monument'. It is this life story that people should use when making decisions about us - including authentic decisions about research.

I look forward to writing up and sharing my diary of adventures from this Churchill Fellowship when I get back home to Wales!

At the end of a very busy second week in Australia (meeting people as part of my Churchill Fellowship), I took some time out to visit the amazing Australian Museum which overlooks Hyde Park and St Mary's Cathedral. It is the oldest museum in Australia and has collections ranging from natural history to anthropology and mineralogy, it also houses the Australian Museum Research Institute (AMRI) which focuses on addressing contemporary challenges such as climate change and biodiversity.

I was particularly keen to visit the galleries and collections that focus on First Nations cultures and experiences. The museum has collaborated with First Nations peoples and communities to develop the exhibitions, and the museum website acts as a platform for First Nations voices with articles from First Nations writers 

Starting on the ground floor, I visited the Burra space to see the Garrigarrang (Sea Country) exhibition which explores the cultural and spiritual traditions of the Salt Water People from the New South Wales coast. I learned about this community's history and Ancestral Law and how knowledge of the Country and way of life is passed from Elders to the next generation. It also includes the 'ghost net' installation made out out of discarded fishing nets that are found on the coast of northern Australia and are responsible for killing wildlife.

Part way through exploring the gallery, the sound of voices singing burst into life in the gallery above.  This turned out to be the Maori Kapa Haka group Te Raranga Whanui - it was breathtaking to see and hear their performance in the middle of the Wansolmoana gallery. It brought the exhibition to life. Particularly as many of the items on display evoke themes emerging in the Fellowship, that of fostering connections and relationality. That includes the weavings and tapa (bark cloth), one of which is shown in the photo above, that are exchanged between the Pasifika people as part of forging and fortifying relationships.

Visiting the museum, especially during a performance by members of the Pasifika community, is highly recommended and something I will take into my final week of this leg of the Fellowship.

As the end of my first (very busy) week in Sydney approaches, I have been reflecting on what I have been learning during my Churchill Fellowship visits so far and realising that a few themes are recurring.

First is the support for the concept of advance research planning whilst also recognising the challenges that accompany its implementation. The questions people ask about how it could work and the problems they would forsee depends very much on their role or background, but always seems to acknowledge that it would be an improvement on the current situation. People often have a story to tell about a negative experience they have had with a particular study, or a difficult conversation, and their frustration with the outcome and the unsatisfactory compromise they (and others) have had to come to as a result.

Second is the central role of relationships and the importance of 'knowing'. This is both in terms of how family members may come to know the values, wishes and preferences of the person they are representing, and also the value of people who anticipate future periods of changing cognition knowing that they have had conversations with those close to them and have plans in place for their future which can bring some comfort.

Third is around the inequalities that are experienced by particular groups who are under-served or marginalised in health and care, and the need to pay attention to ensuring that these groups are not further excluded. This includes First Nations and Indigenous people in both Canada and Australia, where work to build and restore trust has been mentioned in many conversations, and also for groups who often experience social exclusion such as people living with dementia. 

The image accompanying this blog is of a water feature at sunny Darling Harbour (officially called Tidal Feature but often known as the spiral fountain), which I chose because some of the themes coming up in conversations are beginning to feel as though they are 'coming back round'. I am looking forward to meeting lots more people and groups over the next two weeks and seeing where the patterns of these new conversations might seem familiar - and also where they are new!

After a short trip back to the UK (partly to swap the winter wardrobe for a summer one) I have now started the second and final leg of my Churchill Fellowship travels. For this set of  research visits I will be based in Sydney where I am really lucky to be meeting researchers and research groups from a number of different universities who are based here. 

The journey to Australia always feels like a long one (it's 10573 miles from London), and for this trip I decided to fly into Perth and then get a domestic flight over to Sydney. As well as having my first ever view of Perth, it gave me plenty of time to reflect on what I have been learning so far and what I hope to achieve over the next few weeks in Sydney.

What I learned in Canada was the impact that the different legal frameworks and research governance landscape has on legal planning arrangements and how research is conducted. Given that advance research planning (the main topic of this fellowship) sits at the intersection between these, its complexity feels a bit as though it is a jigsaw made up of other jigsaws - there are so many intersecting pieces that it could be almost impossible to see how it all fits together. How could we possibly predict ahead of time what we would like to do about being included in a particular study if we are unable to make a decision for ourselves, when the combination(s) of circumstances where this is needed are almost infinite (our medical condition at the time, the type of study and any risks and benefits involved, where and who is caring for us etc)?

But there is also a simple way of viewing this. It is essentially about raising awareness that, in addition to the sorts of conversations we might have with families and close friends about what is important to us and what we would like for ourselves should we lose capacity, we should also be able to communicate what our thoughts are about taking part in research at some future point if the opportunity arises. 

Flying over to Sydney made me think about other types of day to day preferences we have, such as when you are checking in and get to select your own seat. The factors that influence your decision about which one to pick are driven by your particular preferences and the options available to you. Do you go for a window seat (where the benefit is getting a good view), or an aisle seat (where its easier to get to the toilet and to access the overhead lockers)? This is balanced against the downsides of being in a window seat (having to clamber over and disturb others when you want to get up), or the downside of being in the aisle seat (you either get clambered over or have to move every time your neighbouring passengers want to get past you). Then there is extra leg room, emergency exits, front or back of the plane, any additional costs involved, who we are travelling with etc! And our preferences might change a bit over time depending on the circumstances.

But people in our lives might know what we are likely to prefer because they have travelled with us, maybe we've even chatted a bit about it, and they probably know something about our current situation. If push comes to shove, they could probably pick a seat for us if they have to. 

Maybe advance planning for research is like that too? Or maybe there are better insights or more helpful metaphors once the jet lag has worn off!

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!)

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.
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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)

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!

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!

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!