Foster People's Empowerment:
Better Care Experiences
Better health is directly linked to better access to information, yet most people still struggle to access their own health data. When you can access, manage, and act on your health data, you become a more informed and active partner in your own care and more satisfied with your care experiences. Accessing and sharing your health data empowers you to collaborate with your health team and better track, understand, and manage your overall health and wellness.
You can clarify or correct your information, which will encourage a more open relationship and foster more trust between you and your health team. You can also more easily contribute to your health data by self-reporting through health apps and wearables, which provide your health team a clearer, more comprehensive picture of your overall health. When your health data is stored in a single place, you do not have to bear the burden of shuttling it between care settings or worry about duplicated tests. Empowering people to better access, manage, and act on their health data increases the public's digital health literacy and ensures a more transparent health system.
Health Data in Action
Health Record Access
Challenge: University Health Network patients
lobbied for means to become more engaged in and knowledgeable about their care.
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How data was used: Co-designed by 120+ patients, caregivers, and staff in the University Health Network (UHN) community, myUHN Patient Portal, a website that launched on January 30, 2017, allows UHN patients to access their health records in real-time.
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Result: 10,000 patients were surveyed about their experience using myUHN: 98% reported improved care management and that they were more informed to make decisions about their own care.
Data Sovereignty
OCAP® is a registered trademark of the First Nations Information Governance Centre (FNIGC). For more information, see https://fnigc.ca/ocap-training.
Challenge: Health systems data access is critical for improving the health of First Nations people in Ontario. The lack of mechanisms to meaningfully translate Indigenous data sovereignty principles into practice has resulted in research gaps and unmet health needs.
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How data was used: To address these gaps, Chiefs of Ontario (COO) and Institute for Clinical Evaluative Sciences (ICES) – a not-for-profit research institute that collects Ontario health data – partnered to unlock the data at ICES for use by First Nations organizations and communities. By contacting Indigenous and Northern Affairs Canada (INAC), a department of the federal government, COO and ICES gained access to the Indian Register (IR), which contains data on all First Nations persons in Canada recognized under the Indian Act.
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Result: The COO and ICES created the governance and technical infrastructure for extensive and appropriate use of Ontario First Nations-identified health systems data, resulting in the creation of the largest First Nations health research study cohort in Canada and ensuring that First Nations-driven research priorities (e.g. health care experiences) are now being addressed.
Community Governance Tables
Challenge: Anti-Black racism directly impacts health data with serious consequences on people's lives. Data continues to be extracted from Black communities without the return of tangible benefits.
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How data was used: Inspired by the OCAP (Ownership, Control, Access, and Possession) principles pioneered by the First Nations Information Governance Centre (FNIGC), the Black Health Equity Working Group created the Engagement, Governance, Access, and Protection (EGAP) framework to ensure that data from Black communities is properly collected, protected, and used to promote equity.
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Result: Equity-deserving communities have proven that data in the hands of its residents empowers them to improve structures, overcome barriers, and increase opportunities to thrive.
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