Dialogue on Data
Sharing Health Data for the Public Good
“I’m happy to provide any data that may help someone’s future."
~Patient & Caregiver Consultations, Dialogue on Data
The Ministry of Health consulted with more than 25 patient, family, and caregiver groups and 15 health care organizations to better understand people's health care experiences across Ontario. Most people shared their frustrations about barriers to accessing, using, and sharing health data. Without real-time, comprehensive health data, people across the health care system suffer:
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Patients are forced to repeat their stories and shuttle their health data across care settings
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Providers cannot make informed decisions to ensure the best possible care for their patients
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Public health workers cannot protect or respond to public health threats
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Researchers cannot discover new medications, treatments, or devices to improve health care
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Planners cannot improve services, streamline resources and funding, or better the overall system.
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The Ontario Health Data Council Report identified the need to increase data literacy – the ability to understand data and its use in decision-making – among patients, families, caregivers, providers, planners, policy makers, and leaders as central to shifting from a data-protectionist to data-for-good culture.
Public Support for Health Data Use for Research
“The members of the public we heard from see data as an asset to be used, and generally support research based on linked administrative health data, but there is no blanket approval. Research and health data holding organizations should engage with members of the public to understand and address their concerns about privacy and security, and to ensure that research is aligned with social licence, particularly where there is private sector involvement."
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~Alison Paprica, Director (Strategic Partnerships), ICES​
Context
Recently, health research and news coverage indicate the public's growing investment in how their health data is used. ICES' study sought to capture public opinion on the use of linked health data to improve health service delivery. Read the full study here.
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How was data used
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ICES conducted 8 focus groups with a total of 65 people from Toronto, Sudbury and Thunder Bay in 2015 and 2017. In each focus group, the participants learned about how ICES collects and uses health administrative data and were then asked to reflect.
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Major themes
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Assurance about privacy & security
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Support for health data use for research, with some conditions
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Mixed and negative reaction when private sector is involved​
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Takeaway
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ICES found that most participants were were surprised to learn that health data is generated every time a person interacts with Ontario's health system and that this health data is collected and pooled together to help manage and pay for health services. Once they better understood how health data was being used, they recognized the public benefit of collecting and sharing health administrative data.
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How this affects you
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Your health data is extremely valuable because it helps Ontario better understand the quality and cost of the health system. With your health data, Ontario can provide better, more cost-effective health services, so you can receive more quality care.
Canadian Health Infoway Survey
