Community initiative co-led with patients could improve care for people with complex health and social needs
Feb 28, 2020 – BMJOpinion. Canadian family physician Antoine Boivin and patient partner Ghislaine Rouly describe how they work together with community partners to provide holistic care for patients with challenging social and medical problems
The physician’s perspective
As a physician working in a primary care group practice of 12 000 patients, in a disadvantaged neighborhood of Montreal (Canada), I have often had the feeling of being the “right answer to the wrong problem.” Many of my patients present with medical symptoms (depression, chronic pain, fatigue and anxiety) that are exacerbated by underlying social problems (isolation, poverty, divorce, bereavement, stress, violence or work difficulties). I can sometimes refer those patients to a social worker or psychotherapist, but for many, this is met with suspicion (“You mean it’s in my head?”), resistance (“I’ve seen a shrink before and it didn’t help”) or practical barriers (“I don’t have the money”). Most of all, I feel that health professionals are a poor substitute for a caring friend, family member, or neighbour. It was keen awareness of these issues that prompted me to approach Ghislaine, a much trusted and valued patient partner at our University of Montreal partnership programme, to adopt a new way of caring for patients together.  Her extensive knowledge as a patient and caregiver, her ability to listen without judgement, her humility and her diplomatic skills gave me confidence that working together we could deliver what I could not do alone.
The patients perspective
Ghislaine Rouly—the patients perspective
I have been a patient all my life as I was born with two genetic diseases, and have subsequently had three major cancers, for which I have experienced months in an induced coma. As a result I live with chronic pain. I have also lost a daughter following the early diagnosis of an incurable disease. Despite all this, I have found that you can lead a good life if you are determined to do so. For me, helping other patients has always been a natural thing to do. For over 45 years, I have provided peer-support to other patients, accompanying them on their healthcare journey until their end of life. My experience has taught me a lot about the importance of being treated with humanity; and how this is especially important for those who are isolated, alone, depressed, and sick. In the past decade, I have trained health professionals in medical ethics, health communication, and collaboration, based on my lived experience as a patient.
Four years ago I joined Antoine’s practice as a patient partner, working three days a week with him on a salaried position to care for patients together. We co-designed and co-lead the Caring Community project where patients, professionals and citizens work as partners to bridge medical and social care for people with complex conditions in the community. I was touched by Antoine’s humanity, humility, and concern for his patients. It was clear from the outset that we shared common values and a dream of caring for patients differently, drawing on our complementary skills.
Key learning and next steps
Ghislaine: At the beginning of the project, professionals were telling me that as long as I was here, everything would be fine: but how can we clone you? There is no need for that. There are many patients with great experiential knowledge and engaged citizens with deep knowledge of their community. It is natural and instinctive that people help each other. We have identified such patients and citizen partners in the past year to join our project: we bring them together, support them, and build a team.
Antoine: This project has reminded me that healthcare, in its essence, is about building caring relationships and seeing patients as people with knowledge, skills and life projects. I have learned that it is feasible to integrate patients and citizens as members of the team. However, this requires time, patience, and sensitivity to professional resistance and fears. It is possible to build a two-way bridge between the health system and communities. However, keeping a project like this alive is a tough balancing act. Currently, the most pressing questions in front of us are:
- How to build Caring Communities with patients and citizens in a way that is equitable and inclusive, ensuring that we mobilize a diversity of patients, clinicians and citizens who recognize the specific knowledge of everyone involved, and work toward a common goal?
- How to fund, lead and implement Caring Communities with health and community organisations in a way that is adaptable, sustainable and scalable to other contexts?
- How to rigorously assess the impacts of caring with patients and communities on health and social outcomes? What are the main risks, costs and pitfalls? At this stage, individual cases can help us build an intervention theory and hypothesis. Our next research focus will be to strengthen impact evaluation with more robust designs.
For me, the most important take home message from this initiative so far is that caring with patients and citizens is feasible, enjoyable, natural, and helps refocus care on what matters most to people.
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