1. Recognition of the problem — a disconnect between social challenges and medical care

Social challenges are often not addressed in medical care, although their impact on health is critical. For example, the effects of social isolation on mortality are comparable to smoking 15 cigarettes a day. The illness causes significant changes that threaten social relationships and identity. These changes have an impact on self esteem, sense of belonging, and autonomy. By transforming a “healthy citizen” into a “sick patient”, illness modifies a person’s social relationships (in contexts including employment, education, family life or as a couple or citizen).

The prevalence of chronic diseases today calls for new ways of working with patients to manage their care. Patient-centred approaches have contributed towards significant advances in care and resulted in treatments that more fully respect patients’ preferences, values, and personal experiences. Despite this, the reality is that health care professionals still have a monopoly on the role of healer. Patients live with their condition every day and are experts when it comes to their own experience of illness; this expertise should be welcomed, valued, and fostered by other members of the care team. The patient-as-partner approach embodies the ideal of making the patient a bona fide member of the health care team, a true partner in his or her care. Since 2010, the University of Montreal, through its Direction collaboration et partenariat patient (DCPP — Collaboration and Patient Partnership Directorate), has embraced this approach. Patients are not only active members of their health care team but also are involved in research and provide valuable training to students of health sciences. Including patients as full partners in the health care team entails a significant cultural shift in both medical practice and medical education.

2. The key solution to the problem — Caring Communities in Canada

Caring Communities in Canada represents an important innovation, bringing about change in the current healthcare system, mainly through interventions from professionals. It capitalizes on patients’ and citizens’ experiential knowledge and skills, as well as their ability to develop mutually supportive relationships. This project aims to strengthen community-based primary healthcare by recognizing patients and citizens as caregivers and integrating them into the care continuum. The goal of this innovation is to develop patient care skills, break through social isolation, foster collaboration between the various caregivers in the community, and encourage recovery towards full citizenship. These goals are achieved by integrating patient partners working in front-line teams, connecting patients with citizen partners, and mobilizing the community and municipal decision-makers to create supportive environments.

The Caring Communities have been co-designed and co-led with patients, professionals, and citizens to
bridge medical and social care for people with complex conditions in the community.

3. Key components of the Caring Communities project

The key principles of the Caring Communities approach are as follows:


— The caregiver also has some experience of distress and can provide care based on this experience.
— The caregiver feels the care recipient’s distress as if they were in the same situation, which tends to bring about care.
— Caring has the characteristic that the care recipient and the caregiver grow together.


— “Community” in the caring community means more than just the local community. It also refers to a group of people who share common beliefs and values, e.g. schools and informal groups. It is open and aims to be inclusive, bringing people together around what they have in common.


Caring Communities involves professionals and the wide range of people necessarily involved in meeting the needs of care recipients, e.g. multidisciplinary professional teams, policymakers, and citizens.

Long-term and cyclical, two processes
— A person who is cared for grows while receiving care in the caring community and is transformed into a carer (over a long period).
— In Caring Communities, a person’s desired life goals are clarified (goal-oriented care 6), reflected in the social system, and improved. Even after the social system is built, there is a continuing process of reflection on whether the person is living the life they desire.


— Awareness of meaning in people’s lives as they share the lives they desire and cherish in the community.
— Realization of meaning in people’s lives through caring in their communities when they experience what they cherish and their desired life being taken into account and shared in their communities.
— Creation of social systems and services: local governments and other bodies create systems and services based on a consensus that these are necessary to achieve the lives that people desire.

4. The history and essence of the Caring Communities project in Canada

The project was created in 2016 by Antoine Boivin, a physician working in a primary care group practice with 12,000 patients, in a disadvantaged neighbourhood of Montreal (Canada), and Ghislaine Rouly, a patient born with two genetic diseases who subsequently experienced three major episodes of cancer, including months in an induced coma. Ghislaine was a trusted and valued patient partner at the University of Montreal partnership programme, working three days a week with Antoine in a salaried position as a patient partner. Together they co-designed and co-led the Caring Community project, in which patients, professionals, and citizens work as partners to build bridges between medical and social care for people with complex conditions in the community.

1. Identifying patients who may benefit from patient partner support, when social issues complicate the provision of care for medical problems, and vice versa. The basis is the feeling of limitation among doctors in their ability to find professional solutions to the presenting problem. This may be because of patients’ difficulty playing an active role in their care, low adherence to treatment and follow-up, or social challenges that cannot be addressed within the professional health system. In some cases it is difficult to find out the root cause or the real problem, so another pair of ears with different perspectives helps.

2. Introducing the patient partner, explaining the experience of being a patient herself, and helping other patients to develop their skills, navigate the health system, and reconnect with their community. More than 20 patients have been followed up so far and a family has only insisted on one occasion that only professionals should be involved in their mother’s care.

3. Follow-up meetings — when patients agree, an initial joint appointment is booked at the clinic, with a personal introduction to launch the relationship, a summary of the reason for referral, and an illustration of the cooperation between the doctor and patient partner as trusted team members. Patients are not used to interfacing in this setup, but in the majority of cases they are willing to “trust someone their doctor trusts and works with.” Mutual confidentiality is maintained, patients partners have no access to patients’ medical files, and clinical staff have no access to what patients’ share with patient partners unless there is an emergency (e.g. suicidal ideas) or unless the patient asks them to share relevant information that would help improve their care (e.g. sharing new symptoms that they were too shy to mention to their clinicians directly). Patients are also asked to respect confidentiality and not to disclose personal experiences shared by patient partners. These simple rules of engagement reassure people that their medical file remains private. It creates a new confidential space in which they can share personal concerns with the patient partner acting as a non-judgmental peer, revealing issues that are often not disclosed to health providers, but profoundly affect their care and wellbeing. Once trusting relationships have been established, patients can be empowered to share the right information with the right clinician or caregiver, to ensure that their care is truly aligned with their own goals and priorities.

5. Governance and Management of the Caring Communities project in Canada

A diverse team of clinicians, patients, and citizens delivering care together

In Caring Communities, each team member contributes a different type of expertise. These complement each other, so care can be provided based on common values and principles: clinician partners are experts in disease management, patient partners are experts in learning to live a full life beyond the consequences of their disease, and citizen partners are experts in facilitating social inclusion and participation in the community. Currently, the Caring Community team includes a dozen primary care professionals in Montreal, Canada (four physicians, two nurses, a social worker, a psychologist, and a clinical ethicist) and a team of five patient and citizen partners (with personal experience of different chronic conditions, self-management support, peer-support, and citizen engagement with community organizations for homeless people, women’s groups, immigrants, and elderly people living alone). In 2019, a second primary care clinic joined the project and applied for further funding. The local health authority established collaborations between the Caring Community and a range of its local health and community programmes (primary care, mental health, homelessness and addiction, home care, geriatrics, and public health). As a result, Caring Communities is slowly growing into a generic bridge between local health and community care.

6. Lesson learned & Insight — the Caring Community project in Canada

Healthcare is essentially about building caring relationships and seeing patients as people with knowledge, skills, and life plans. One of the insights coming from the project was that it is feasible to integrate patients and citizens as members of the team. However, it takes time, patience, and sensitivity to professional resistance and fears.

One of the insights coming from patients is that people often choose goals that have nothing to do with their disease and start thinking about themselves beyond their identity as a patient. The conversation quickly changes from “what can others do for my health?” to “what can I achieve for myself, together with others?”. It has also been surprising what patients can achieve after one or two meetings (e.g. a patient who felt more confident to express her needs to her pain specialist, another who had been house-bound for years but rapidly started to socialize and involve herself in community groups). So sometimes progress takes place much faster than anticipated, from the perspectives of both patients and patients’ partners.

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 facing the Caring Communities are:

— How to build Caring Communities with patients and citizens in a way that is equitable and inclusive, ensuring that we mobilize diverse patients, clinicians, and citizens who recognize the specific knowledge contributed by all those involved, and work toward a common goal?

— How to fund, lead and implement Caring Communities with health and community organizations in ways that are adaptable, sustainable, and scalable to other contexts?

— How to rigorously assess the impacts of caring alongside patients and communities on health and social outcomes? What are the main risks, costs, and pitfalls? At this stage, individual cases can help us to build a theory and hypothesis to support our interventions. The next research focus will be on more powerful impact assessments with more robust designs.

7. The impact of Covid-19 — a pivotal moment in community care, based on the Caring Communities experience in Canada

The COVID-19 pandemic resulted in the most rapid and profound transformation in healthcare in many healthcare professionals’ careers. The crisis has changed their teams, their relationships, and who they are.

The approach has shifted from “me, myself and my patients”, to “we’re all in this together.” Within a week, primary care practice has changed from exclusive face-to-face meetings to about 95% telephone consultations. Accessibility — an intractable problem in Canadian primary care reforms over the past 20 years — increased markedly within a few days. The “bureaucratically frozen public health system” has thawed, and massive improvements have been achieved without adding a single professional. Hierarchies have been shaken and people have mobilized the intelligence and creativity of the whole team to transform the way they work together. This team includes receptionists, cleaning staff, equipment suppliers, and managers as well as hands-on health professionals.

The immediate tragedy happened mostly in uncontrolled outbreaks in long-term care facilities for the elderly where 80% of deaths were concentrated and it was difficult to provide basic care due to staff shortages. Limited visits from family and loved ones compounded the experiences of grief, suffering, and anxiety relating to those deaths. At the community level there were looming long-term challenges relating to the health, social and economic impacts of the pandemic, including unemployment, isolation, and untreated long-term conditions in the areas of cancer, heart disease and mental health.

“New” technologies (i.e. telephone, e-mail, and the internet) were rapidly adopted for prescribing, document exchange, and video conferencing. Healthcare professionals were suddenly questioning the value of every diagnostic test, referral, and treatment, asking if their interventions do more harm than good (e.g. balancing the risk of in-hospital investigation for chest pain in people at high risk of Covid complications, in view of that day’s local epidemic data).

The pandemic made many people realize that patients, citizens, and community members can be trusted as caregivers. Mothers and fathers have become the doctors’ eyes and ears when assessing a child’s illness over the phone. The majority of patients with Covid (and other conditions) have been caring for themselves, by themselves, at home, with help from neighbours, family, and friends.

Doctors were impressed by how resilient many of their patients are. They embraced change, offered constructive suggestions and mobilized their knowledge and inner resources to adapt to the crisis, showing appreciation and being reassured by the ongoing connection with a trusted team of health professionals who know them. Experienced patient partners working closely with the primary care team coached and supported other patients to help them find practical solutions in new situations.

People who were already working together in theory have become real partners, as community organizations and health professionals seek joint solutions to common practical challenges. Volunteers of all ages (children, teenagers, adults, and seniors) have alleviated the health impacts of social isolation by maintaining contact with people confined at home. Community organizations, peer-support workers, social care, and volunteers were acknowledged as key players in addressing huge needs in the areas of psycho-social, practical, food, and economic support. Local initiatives came into being in the health care system and local authorities to meet the needs of the most vulnerable individuals in communities (e.g. turning old buildings into individual rooms to provide home isolation for homeless people). Professional turf wars have been abandoned as people realized their inter-dependence with colleagues working in intensive care units, hospitals, emergency rooms, other primary care clinics, home care, long-term care, palliative care, public health, not-for-profit community organizations, and informal social support networks.

Suddenly many people realized the common vulnerability of being at risk of illness and death. Everyone was deeply reminded of their interdependence and personal need for support. At the same time, many people have become much more aware of their privileges. There is a feeling that we are all in the same boat, but not all of us have access to lifeboats. “Health inequalities” and “social determinants of health” have changed from abstract concepts to real patients, friends, and community members who have fallen ill, lost their jobs, been unable to pay for rent or groceries, lived alone or been unable to implement “home isolation” because they had no home or were living in crowded shelters or on the streets.

There is also a strong feeling that the choices now being made are likely to shape individual and collective futures.

The focus in the Caring Community project has been on three things:

1. Linking people with community care to address Covid-related and non-Covid related health care needs.

2. Facilitating bonding among community members to facilitate mutual support with day-to-day activities, groceries, communication needs, etc.

3. Building bridges with community support organizations to ease the psycho-social impacts of the pandemic.

Since primary care facilities have practically emptied and staff have been redeployed, patients were reluctant to seek consultations. Consultations dropped by 50%. The Caring Community therefore had to switch from reactive to proactive care. This meant pulling up a list of patients and calling those who were most vulnerable, or working with communities and experienced patient partners who could proactively call people and find out their current needs. At present these include dealing with the consequences of social isolation and practical issues (including groceries), but also letting all patients know that there is still a team behind them if they need it.

A stronger sense developed that doctors are both caregivers and care recipients, that they need to care for one another. Health professionals are vulnerable and need to be supported but can also provide care beyond their role as health professionals. They are part of the community they serve. They are on the same team. What will most likely remain after the pandemic is a changed sense of distance and proximity. There is a new sense of the importance of neighbourhoods. Support networks exist in proximity, but those who are far away can also come closer, when people around the world can be gathered more easily. There is a changing idea of what is close and what is far away — how can we provide support to those who are physically distant from us?

8. How do Caring Communities exemplify Integrated Community Care?

The Caring Communities approach explores the 7 ICC effectiveness principles by creating a community of practice and searching for a better understanding of how to transform culture and values. Most of the ICC effectiveness principles are, to a greater or lesser extent, woven into the idea of Community Care (CC). The central role is played by primary care and goal-oriented care (see ICC principle 3), since this is one of the central points of Caring Communities.

New tendencies have included valuing and fostering the capacities of all actors (principle 1), the importance of building local alliances, investing in balanced power relations, and working towards shared goals (see ICC principle 2). There is an overarching aim of supporting strong and inclusive communities (see ICC principle 3 and 4).

Caring Communities promotes collaboration between different members of the community, capitalizing on the ability of patients and citizens to create social connections and take care of each other. The mission is to partner with patients, citizens, professionals, and decision-makers to build bridges between informal and professional care (see ICC principle 1 and 3).

Caring Communities focus mostly on co-developing health and wellbeing and enabling participation. Caring Communities also invest in connecting people, building resilient networks and transforming the community. The evaluation focuses mostly on how individual lives have been transformed and improved (see ICC principle 7).

Building alliances and partnerships seems to be the main ingredient required in CC practices. Investing in these alliances can create a secondary, reinforcing spillover effect: if people are acknowledged and supported in their self-care and informal care capacities, then they are likely to take those skills, knowledge, and attitudes with them and put them into practice within their own networks and communities (i.e. the dimensions of home, place, and assets). In its focus and operating model Caring Communities is an example of Scaling Deep 15: Impacting cultural roots. This is based on the recognition that culture plays a powerful role in shifting problem domains, and must be deeply rooted in people, relationships, communities, and cultures. Spreading big cultural ideas and using stories to shift norms and beliefs, investing in transformative learning and communities of practice.





Antoine Boivin, MD PhD, Canada Research Chair in Partnership with Patients and Communities
Scientific co-director, Centre of Excellence for Partnership with Patients and the Public
Family physician, Notre-Dame Family Medicine Group
Associate Professor, Departments of Family Medicine, University of Montreal