RESEARCHER BLOG 4: DR REMI BEC – OUR FRENCH MASCOT DISCOVERS CANADIAN DEFINITIONS OF PATIENT AND PUBLIC INVOLVEMENT

Welcome to the fourth in a series of researcher blog posts on Remi Bec’s mission to share his experience of Designing in Health with Canadian researchers. The first post is here and the last post can be found here.

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About the author

After studying model making and space design in France, Remi Bec completed a PhD exploring the use of games to promote physical activity. Following this, Remi was seconded to the Translating Knowledge to Action team (TK2A – part of the CLAHRC YH) where he was the design researcher lead based at the Royal Hallamshire Hospital. He has now returned to Lab4Living where he is leading on the ‘Play‘ theme within the 100-year Life project. 

He is also director, founder of a social enterprise, GoFit4Fun CIC, which delivers services in the community to fight social exclusion and sedentary behaviours through the co-creation and play of games.

In this post:

Canadian Health researchers are keen to involve end-users in the process and the medical education in Montreal brilliantly demonstrates it!

Indigenous centred research projects

Top news: A conference that seemed to genuinely try to be more inclusive – here by having representatives from the first nations.

• Opening of Quality Forum conference

The conference was big, real big. I don’t think I have seen a conference of that size! It must be an American / Northern American thing… There were 4 screens in total and a stage – OMG I would have felt a little nervous if I had to do a speech on there. But I was most impressed with the opening of the conference: Sekwalia (sorry for misspelling) an indigenous person delivered the most inspiring speech. I was awestruck. She made the entire room stand up and do some breathing relaxations. Her slow, measured, and spiritual way of talking resonated a lot in me, which brought out of me all sorts of emotions. I liked the way she framed that we needed to “not collect dust, be meaningful”! She also referred to a blanket that was hung in the room and co-created by different indigenous communities.

The blanket included 4 colours (Red, Yellow, Black and White) that represented 4 age groups. The first group, Red, represents the new beginnings and how we are now connected with emotions. The second group, Yellow, is about childhood, the time of discoveries and learning. The third group, Black, represents adulthood and especially the retrospection and self-reflection. The last group, White, corresponds to the elders, holding the wisdom and knowledge. Sekwalia added for that last group that even though being wise and knowledgeable, they can also still be a child at times. I connected a lot with this statement since it is my philosophy and attitude to life. And this is why I am so interested in the theme I explored since 2006: using play and games to encourage a behaviour. Most of my research in this area is around youth but in the context of the 100-year Life at Lab4Living, I would love to explore further how to transfer my research to promote play among older people.

Sekwalia gave more insights about history – of the country, of her people and of the European colonisers – which I knew little about. At a conference that aims to put patients at the centre of the system, it felt like a great idea to kick off the event by introducing someone who represents an extreme minority of patients: the first nations!

• Session at Quality Forum conference

I started to learn a bit more about Indigenous people at breakout session of the conference called ‘Inviting Indigenous Voices into Our Health Care conversations’. Another indigenous woman kicked off this session by telling the story of indigenous people’s life and community. With the country’s history and arrival of European colonisers, many indigenous communities (especially the oldest) do not trust the white man and the health system – some horrifying stories were told by this woman that I will report in another section). The indigenous speaker then finished by reporting what the experience of an indigenous person receiving health treatment is like. In a nutshell, they do not speak English, travel 3h to go to hospital for a 15min appointment, and leave with little to no care at all, because they didn’t get enough time, couldn’t communicate with the language barrier, or just didn’t trust the healthcare professional.  This last point is crucial and in our current (healthcare) systems, we must put the voice of all users/patients first, before they lose trust towards the (health) system. It’s about trust and relationships and for this we need to take more time.

The facilitators then gave our group a task around improving the discharge of indigenous people after a consultation at GPs. This is how I met Chris Rauscher who is now retired from Geriatric Medicine but who cannot keep his interest away from ensuring health is represented from a patient voice perspective! Very interesting fella with a similar approach to life, work and ethic – it was great to share our views and see we were on the same wavelength. (It appeared afterwards that Chris knew all the crew at HDL and has done some work with them in the past). Back to our group discussion: we ended up creating a plan of action to ensure communication between the health care professionals and the indigenous communities, and to structure an interview session that is driven by the patient, not the professional. The professionals are there only to adapt their suggestions to the needs of the patient. We didn’t even start speaking about the discharge moment when the facilitators heard us talking, highlighting we were on the right track. I was getting really excited to brainstorm ideas of products and devices that are tailored to the type of community indigenous people come from, and how they might be able to stay connected with health care professionals to remain more healthy and to promote a form of self-management once back in their community!

Designing for a community like indigenous people that is unrepresented – or even worse that has been ignored, rejected and even destroyed – presents all types of challenges – and putting them at the centre of the design must be the minimum. However, some indigenous communities have lost trust and there is a need to re-develop trust with them. We also need to find new ways of communicating, with means that are other than words since often Indigenous communities do not speak English. We also need to understand what their spiritual references are so we can co-produce outcomes that are meaningful to those that have different needs and necessities… It is in this situation that Design can play a role and face those challenging, using making as a main enquiry. All those challenges are what keeps creativity going and how knowledge is gained, as much about the ethnic group(s) that collaborates as yourself, to find inspiration and design new ways of living, thinking, making, to make you a better person 😊

Putting the voice of patients at the core of health care system

Top news: A brilliant system to raise awareness about and train the future health care professionals to work with patients and to develop a relationship of trust between the two.

We met up with Caroline Wong & Sylvain Bédard from the Centre of Excellence for partnerships with Patients and the Public (CEPPP) and based at the Research Centre of the UdeM Hospital Centre (CRCHUM) in Montreal, Quebec. Caroline is the executive Co-Director at the centre of excellence and Sylvain is the patient coordinator who recruits and supports patients during research projects. They are a team of 15 and there are 7 ex-patients like himself.

Caroline and Sylvain got us up to speed as to how the (patient oriented) health system works in Canada, how health care professionals are trained, and we learnt a bit more about the CIHR, which is the NIHR equivalent in Canada. CIHR focus started with medical education but there is now a shift to have more of a research focus. They created what seems to be a very original and effective system to teach health care professionals; the necessity to put patients at the core of their practice and research. In 2010, the school of medicine trained health care professionals following the standard ways of doing so and did not include any patients in the curriculum. Then the school of medicine collaborated with CEPPP, which was the first office-patient partnership in the university. This collaboration brought innovation to the medical education and a patient partnership emerged with all health care professional trainings, exploring together in this interdisciplinary setting the meaning of collaboration from a Doctor’s point of view, nurses… In each course for the first 3 years the concept of patient partnership is taught. In this French Canadian state, patients are seen as a “membre entier” of the team – which means as a person, translated literally as a ‘member as a whole’. The patient there is seen as a member of the team who contributes at equal level. The project is not centred around the patient but the patient is a partner, working with the team to research about the project. Now about 6,000 students are trained every year at the university of Montreal to conceptually engage the patient as equal partner. On top of this ‘conceptually ready’ approach, since the future healthcare professionals have worked throughout the first 3 years of their education with a group of patients, they also have developed a bank of patients who have worked with healthcare professionals during their education and who have now developed trust with them. This is a good way to mobilise further those patients than just for medical education – and we all know the benefits of working together and developing trust to produce better outcomes. This behaviour and way of thinking is quite ahead of what is seen in the UK and this is partly due to how healthcare professionals are trained.

Next time: A lot of things around ‘Play’ takes place in Canada – as much about my research as others’.

About this blog

This trip to Canada (Vancouver BC, and Montreal, Quebec) was made possible thanks to NIHR CLAHRC (TK2A theme) and Lab4Living (Sheffield Hallam University) in the UK. I, Dr Remi Bec, Design Researcher, relate in this summary my Canadian experience and therefore this entire content is my views and opinions only, not the ones of the funders. I also apologise for some of the content I relate since there might be elements of the stories that might not be fully accurate. Some details might have been forgotten or changed slightly but it is not to better fit my story – it is solely I have exchanged so much and interacted with so many people along the way that my little brain cannot retain it fully!