Archives du mot-clé patient partners
Patient Engagement Lunchtime Learning: A Debwewin journey through digital storytelling
Join CHI’s guest speaker, Dr. Kendra Rieger and learn about her engagement with First Nations women with experiences of breast cancer.
Jan. 17, 2024 | Noon – 1 p.m. (CST)
Uncover the power of narratives in health research at our upcoming virtual patient engagement workshop. In this session, you’ll delve into the impact and meaningfulness of storytelling approaches for patient engagement and decolonizing research. Discover the importance of utilizing Indigenous research methods, particularly the art of storytelling, to enrich health research practices. This session provides a unique opportunity for critical reflection on engagement approaches with a focus on Indigenous health research. Be part of a community dedicated to advancing knowledge and fostering inclusive methodologies.
Pride in Patient Engagement in Research (PiPER) (événement anglais)
This research day will feature key notes, virtual poster sessions, interactive workshops, storysharing sessions, and an art exhibit on topics in the field of patient engagement in research. The program also includes the launch of the UHN Patient Engagement in Research Toolkit.
PiPER Research Day is a chance for researchers, patient partners, students, and others to gather in-person, build relationships, share success stories and exchange the latest information while promoting and strengthening the current practices of patient engagement in research. PiPER Research Day offers an opportunity to network and engage with diverse people involved in patient-engaged research from various settings, organizations, and program areas across Canada.
COVID-19—A pivotal moment in community care
This essay is part of a series of reflections on primary care during the pandemic presented by Réseau-1 Québec. The original essay was published in The BMJ Opinion on April 7, 2020. A French translation is available here >>
As primary care physicians and community practitioners, we are first hand witnesses of the covid crisis and its impact on our communities. The pandemic wave is just hitting Canada and we have benefited from the experience of other countries to implement early measures of containment, preparation, and care management. As elsewhere, we are uncertain about the outcomes for our patients, our communities, our colleagues, our families, and ourselves. But as we navigate the changing landscape of community care in downtown Montreal, we are observing the most rapid and profound healthcare transformation of our entire careers. This crisis is changing our teams, our relationships, and ourselves.
Teams are changing
Our spirit has switched 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% phone consultations. Accessibility—an intractable problem of Canadian primary care reforms over the past 20 years—has markedly increased within a few days. The “bureaucratically frozen public health system” we thought we inhabited has unfrozen and massive improvement has been achieved without adding a single professional. Hierarchies have been shaken and we have mobilized the intelligence and creativity of our full team in transforming the way we work together. A team which includes receptionists, cleaning staff, equipment suppliers, and managers as well as hands on health professionals.
We have rapidly adopted “new” technologies (ie. phone, emails, and internet) for prescriptions, document exchange and video-conferences. We are questioning the value of every diagnostic test, referral, and treatment, asking ourselves if our interventions do more harm than good (ex. balancing the risk of in-hospital investigation for chest pain in people at high-risk of covid complications, given local epidemic data of the day). We are also increasing capacity by postponing a number of screening tests and chronic care follow-up, all of which needs to be carefully balanced in order to minimize indirect pandemic impacts on other major health conditions. And we are sharing uncertainty collectively rather than individually. As one of our colleagues said: “We don’t always know where we are going, but we are going together.”
Relationships and collaborations are changing
We are realizing that patients, citizens and community members can be trusted as caregivers. Mothers and fathers have become our eyes and ears when assessing a child’s illness over the phone. The majority of our patients with COVID (and other conditions) are caring for themselves, by themselves, at home, with help from neighbours, family and friends. We have been impressed by how resilient many of our patients are. They are embracing change, offering constructive suggestions, mobilizing their knowledge and inner resources to adapt to the crisis, showing appreciation of the and reassurance of being remaining connected with a trusted team of health professionals who know them. Experienced patient partners working closely with our primary care team coach and support other patients to help them find practical solutions to their new life.
Collaborators on paper have become real partners, as community organizations and health professionals seek joint solutions to common practical challenges. We see narrow professional roles and silos suddenly giving way and new ways of working adopted. Volunteers from all ages (kids, teenagers, adults and seniors) are reducing the health impacts of social isolation by maintaining contact with people confined at home. Community organizations, peer-support workers, social care and volunteers are acknowledged as key players to address the huge needs for psychosocial, material, food and economic support. Local initiatives with the health care system and municipalities are being invented to respond to the needs of the most vulnerable individuals in our communities (eg. turning old buildings into individual rooms for home isolation of homeless people). Professional turf wars have been abandoned, as we realize our inter-dependence with colleagues working in the 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.
Changing ourselves
Society is no more divided into healthcare workers and others. We suddenly realize the common vulnerability. We are all at risk of illness and death. We are deeply reminded of our own interdependence and personal need for support. We are deeply shaken in our professional limits, facing a disease for which no specific treatment yet exists. We have reintegrated within the community we serve; reciprocally acting as care-givers and care-receivers. We are grateful to the teenagers delivering food to our parents, the neighbours giving us lasagna and a smile after a long day of work, the child care workers helping with our kids.
And we are more intensely aware of our privileges. We are all in the same boat, but not all of us have access to lifeboats. “Health inequalities” and “social determinants of health” have turned from abstract concepts to real patients, friends and community members who have fallen ill, have lost their jobs, are unable to pay for rent or groceries, are living alone, or cannot implement “home isolation” because they have no home, living in crowded shelters or in the streets.
These lived experiences mobilize the health professional in us, caring for one patient at time, but also the human beings in us, caring about each other in connection with our communities. Communities that have always been there, sometimes without our awareness, but that we see and value more clearly now.
Witnesses and actors of a history in writing
This is not a movie we are watching on TV but a history we are writing together. We are at a crossroad that could tear us apart or make us stronger as teams, health systems, and communities. What we are witnessing at the moment is being written, imprinted, in our experience and memory. Who knows which turn we will take next, and which of these changes will last. But these choices are likely to shape our individual and collective future.
Antoine Boivin, Family Physician and Canada Research Chair in Patient and Public Partnership, Centre intégré universitaire de santé et de services sociaux du Centre-Sud-de-l’Île-de-Montréal.
Manuel Penafiel, Community organizer, Centre intégré universitaire de santé et de services sociaux du Centre-Sud-de-l’Île-de-Montréal.
Ghislaine Rouly, Patient-partner and co-lead of the Caring Community research-action project, Montreal.
Valérie Lahaie, Public Health and Partnership Coordinator, Centre intégré universitaire de santé et de services sociaux du Centre-Ouest de l’île de Montréal.
Marie-Pierre Codsi, MD, home care services, Notre-Dame Family Medicine Group, Montreal.
Mathieu Isabel, Medical Director of homeless services, Faubourgs Community Health Center, Centre intégré universitaire de santé et de services sociaux du Centre-Sud-de-l’Île-de- Montréal.
Brian White-Guay, Medical Coordinator of the Notre-Dame Family Medicine Group COVID response team, Centre intégré universitaire de santé et de services sociaux du Centre-Sud-de-l’Île-de-Montréal.
Original text published in The BMJ Opinion, April 7, 2020.