The Summit

The annual Patients Redefining the Future of Health Care in Canada Summit is an initiative led by Save Your Skin Foundation in collaboration with the Canadian Psoriasis Network and an Indigenous volunteer from Kiyasiw Consulting. It provides opportunities for patients, caregivers, and patient advocates and representatives from diverse disease and disability groups to come together to discuss a shared vision for healthcare in Canada. This year’s theme is Meeting people where they’re at: Transforming Health Care to Meet the Needs of All, a Multi-Faceted Response.

Register for this year's Summit

Learn about the summit's objectives and goals...

Enhance participants’ knowledge about health, social determinants of health in and associated systems in Canada, and their impacts on key populations to support greater equity and inclusion addressing Canada’s diversity; Create synergies and recognition of common issues across patient groups and other healthcare stakeholders; Engage policymakers and foster collaboration between patient communities and other relevant groups, including researchers, government, non-governmental agencies and other partners; and Support conversations about how patients can influence policy and design to build the health systems they deserve.

The initiative developed three ongoing working groups: the Integrated Models of Care (IMOC) working group, the Health Data working group, and the Patient-Report Outcome Models (PROMs) working group.

9th Annual Patients Redefining the Future of Health Care in Canada 2024 Summit

9th annual hybrid Patients Redefining the Future of Health Care in Canada Summit

Meeting People Where They’re At: Transforming Health Care to Meet the Needs of All, a Multi-Faceted Approach, the 9th Annual Patients Redefining the Future of Health Care in Canada Summit, will be held in a hybrid format (in-person in Toronto and online) from November 19th-21st, 2024. This annual patient education and awareness Summit is a joint project between Save Your Skin Foundation and the Canadian Psoriasis Network, in collaboration with partners in Indigenous Health.

Introducing our venue for the Summit: The Japanese Canadian Cultural Centre! Get ready for the upcoming summit! Register now!

SAVE THE DATE! November 19, 2024

Registration is now open 2024 INSTA_EN.png

Pre-Summit Webinars

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Each year in the months leading up to the Summit, the organizers offer a series of webinars. Each Webinar features a variety of experts and discusses a different topic.

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Integrated Models of Care Working Group

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About the 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:

1) To identify and examine promising, good, and best practices in integrated models of care*; and

2) 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

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

What is the Health Data Working Group?

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

1) To define what it means for patients to own and access their personal health data; and

2) To influence relevant stakeholders to enable patient ownership of and access to personal health data.

What is the Declaration of Personal Health Data Rights in Canada?

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. Since the Declaration’s launch in June 2021, it has been endorsed by 27 patient groups as well as 9 individual patients and caregivers. 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 these links, please click here.

Declaration of Personal Health Data Rights in Canada – Endorsements

To endorse the Declaration of Personal Health Data Rights in Canada:

Read the full Declaration, available here.

OR

Fill out the appropriate form below:

Endorsing as an Organization

Endorsing as an Individual

Endorsements as of June 2024

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

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8th Annual Patients Redefining the Future of Health Care in Canada - 2023

Meeting People Where They’re At: Modernizing Health Care to Meet the Needs of All, the 8th Annual Patients Redefining the Future of Health Care in Canada Summit, was held virtually during the week of November 13th, 2023. This annual patient education and awareness Summit is a joint project between Save Your Skin Foundation and the Canadian Psoriasis Network, in collaboration with partners in Indigenous Health.

Here’s a look at the keynotes and panelists from last year!

Summit Recordings

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Day 1: Challenges to meeting people where they're at

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DESCRIPTION:

On Day 1 (November 13th, 2023) we honed in on the social and structural determinants of health, and the impact on health outcomes, especially accessing the health care system for conditions that patients may have.

Day 3: Opportunities to modernize healthcare to meet the needs of all

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DESCRIPTION:

Day 3 focused on the fundamental shifts in our healthcare systems required to give people the opportunity to address the challenges that were talked about in Day 1 and 2. It also focused on the importance of creating healthcare systems to “Meet people where they’re at,” specifically, integrating co-design and the concept of “nothing about us without us,” in all aspects of health care and social care, the critical role of data and the notion we heard from Dr. Mackenzie from two Summits ago that: “If you don’t get counted, you don’t count,” and themes of mental health and team-based care that weave through much of what was talked about in days 1 and 2.

Day 4: Patient Planning Session - Restricted to patients/caregivers and related groups

DESCRIPTION:

Day 4 is a dedicated planning day restricted to patients, caregivers and patient/caregiver/citizen groups. This is an action planning conversation based on the themes from this year’s event and what the Summit working groups (PROMs/PREMs, Data, Integrated Models of Care) have been working on over the past year.

You can view the full playlist here