Summit Working Groups

The Patients Redefining the Future of Health Care in Canada Summit has developed two, patient-led working groups that are supported throughout the years to continue collaboration on common issues and opportunities identified at the annual Summits. These are: the Integrated Models of Care (IMOC) working group, and the Health Data working group, and the Patient-Reported Outcome Models (PROMs) working group.

explore the working groups

Integrated Models of Care Working Group

Health Data Working Group and the Declaration of Personal Health Data Rights in Canada

Declaration of Personal Health Data Rights in Canada – Endorsements

Integrated Models of Care Working Group

Formed from the 2019 fourth annual Summit, the Integrated Models of Care (IMOC) Working Group has the following purposes:

To identify and examine promising, good, and best practices in integrated models of care*; and
To help spread these promising, good, and best practices to other jurisdictions of Canada, including rural and remote regions.

*The identified promising, good, and best practices do not need to be specific to a particular health condition. “Integration” includes the integration of physical and mental health; the determinants of health; equity; cultural safety; and trauma-informed care. In addition, models that specifically address Indigenous health and healing are of particular interest.

Case Study 1: Community Health Centres

After some scanning, the working group determined that the World Health Organization’s Integrated, People-Centred Health Services Framework was well-aligned with the group’s definition and goals. Canada supported the adoption of this WHO Framework in 2016. With a survey, the working group identified and verified the alignment of a number of different health services that are Canadian examples of this WHO Framework in action.

Community Health Centres (CHCs) are an example of integrated primary health care, incorporating physical and mental health; the determinants of health; and health equity.

Download Full Case Study

Case Study 2: Indigenous Primary Healthcare Organizations

Formerly known as Aboriginal Health Access Centres (AHACs), Indigenous Interprofessional Primary Care Teams (IIPCTs), Indigenous Community Health Centres (ICHCs) and Indigenous Family Health Teams (IFHTs), Indigenous Primary Health Care Organizations (IPCHOs) is a term referring to all Indigenous-governed and culture-based primary health care organizations that address the physical, spiritual, emotional, and mental wellbeing of First Nations, Inuit, and Métis (FNIM) peoples and communities.

IPHCOs are community-based healthcare organizations in Ontario that focus on providing culturally appropriate and wholistic health services to Indigenous peoples. These centres are places of healing and belonging for clients, marginalized with complex histories of racism, trauma and stigma; and play a crucial role in addressing the unique healthcare needs and challenges faced by Indigenous communities, aiming to improve health outcomes and reduce health disparities.

Download Full Case Study

Health Data Working Group and the Declaration of Personal Health Data Rights in Canada

Formed from the 2019 fourth annual Summit, the Health Data Working Group has the following purposes:

To define what it means for patients to own and access their personal health data; and
To influence relevant stakeholders to enable patient ownership of and access to personal health data.

*The identified promising, good, and best practices do not need to be specific to a particular health condition. “Integration” includes the integration of physical and mental health; the determinants of health; equity; cultural safety; and trauma-informed care. In addition, models that specifically address Indigenous health and healing are of particular interest.

The Declaration of Personal Health Data Rights in Canada aims to build consensus among patients, citizens, and groups representing them, create awareness, spur conversations, and inform policies and decision-making. It seeks to promote the equal importance of both privacy and sharing. The working group undertook a brief review of the current landscape related to personal health data. Various drafts were revised with feedback from a range of health data custodian perspectives, but with a major focus on the perspectives of patients, caregivers, citizen groups and patient group such as SYSF.

Personal health data are critical to patient safety and quality care leading to better health outcomes, while fuelling research and innovation to benefit individuals, groups, and the general public. The Supreme Court of Canada has found that people own and have a continuing interest in and control over their personal health data, while custodians of those data own the records. Because of this, people in Canada have corresponding rights over the personal health data they provide. These eleven rights are: to be informed; to consent; to access, portability & correction; to de-identification; to benefit; to object to processing; to restrict processing; to a complaint process; to privacy & security; to erasure; and to engagement.

The Declaration is available in two formats. To read or download the full Declaration, click here. To read the Executive Summary of the Declaration, click here. To read the full story including visuals and, please click here.

Declaration of Personal Health Data Rights
in Canada – Endorsements

Endorse the Declaration of Personal Health Data Rights in Canada

We invite organizations and individual patients/caregivers to join us in affirming every Canadian's personal health data rights.

How to endorse:

Review the Declaration: Please read the full text to ensure it aligns with your organization's values. Read the full Declaration, available here
Provide your details: Fill out the appropriate endorsement form.
Grant permission: By submitting the form, you consent to the following:
- Your organization's name will be listed publicly as an endorser on our website and related documentation.
- You grant us permission to use your organization's logo for the purpose of visually displaying support for this initiative.

Endorsing as an Organization

Endorsing as an Individual

Endorsements as of January 2025

bY pROVINCE

Alan Huang, Caregiver, Vancouver
Lisa Bains, Caregiver

Margriet Eygenraam, Brampton
Michael Eygenraam, Brampton
Alies Maybee, Patient partner, Toronto
Andrea Redway, Lung cancer patient/survivor/advocate, Ottawa
John Sawdon, Lung cancer patient/advocate, Whitby
Robin Sully, Multiple myeloma patient, Ottawa
Debbie Roccia, Survivor
Armand Braun, Patient
Sylvia Timm, Patient
Francis Monize, Patient Partner
Bonnie Hall, Cancer Warrior
Paula Henderson, Patient