56 min
S2E7 - Engaging with your health data As PER Usual
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- Medicine
Episode overview
In this episode of asPERusual, host Anna Chudyk sits down with representatives from the SPOR Canadian Data Platform to learn about the different ways the network is engaging Canadians in conversations about their health data. Key topics covered include:
* the ways in which multi-regional data access contributes to a learning health system,
* how health data can contribute to improvements in health and health equity,
* ways in which the network engages Canadians in conversation about what they think about health data and its use and the types of health data and outcomes that matter to them, and
* patient and public engagement in the network’s governance.
Guests Kim McGrail, Frank Gavin, and Catherine Street also discuss key issues that patients and the public have raised about their health data, which revolve around the themes of:
* trust, security, and safety;
* equity, fairness, and access;
* data availability and the types of data that are collected;
* the language used to talk about data, and;
* ownership — e.g., who owns health data? who controls how “their” health data are used?
As you’ll hear stated in episode, “Health data really is for all of us… so for those who are interested, there's ways to get involved. And those who are less interested can have some trust that there are people like them who are involved, and therefore they they can worry about other things that might be more of a priority and interest to them… we all have a responsibility to understand the data that we're using.” So what are you waiting for? Tune in and join the conversation about your health data!
Meet our guests
Catherine Street is the Director of the Newfoundland and Labrador SPOR SUPPORT Unit and the Executive Lead for Public Engagement with Health Data Research Network Canada. She has worked in Patient / Public Oriented Research since 2014, when she was appointed Director, NL SUPPORT at Memorial University, St John’s Newfoundland and Labrador .
Frank Gavin chaired the Public Advisory Council of the Health Data Research Network (Canada) from 2019 to early 2024. He has been involved in healthcare and health research as a patient, a caregiver, and a member of the public, often in relation to children's health, since 1995. Frank taught English at Centennial College in Toronto for 30 years.
Kim McGrail is a Professor in the UBC School of Population and Public Health and Scientific Director of Health Data Research Network Canada. Some of her research uses large data sets to look at the effects of big policy changes such as changes in the way physicians are paid. She also has led deliberations with the public on how health data can be used to benefit people and communities.
This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit asperusual.substack.com
Episode overview
In this episode of asPERusual, host Anna Chudyk sits down with representatives from the SPOR Canadian Data Platform to learn about the different ways the network is engaging Canadians in conversations about their health data. Key topics covered include:
* the ways in which multi-regional data access contributes to a learning health system,
* how health data can contribute to improvements in health and health equity,
* ways in which the network engages Canadians in conversation about what they think about health data and its use and the types of health data and outcomes that matter to them, and
* patient and public engagement in the network’s governance.
Guests Kim McGrail, Frank Gavin, and Catherine Street also discuss key issues that patients and the public have raised about their health data, which revolve around the themes of:
* trust, security, and safety;
* equity, fairness, and access;
* data availability and the types of data that are collected;
* the language used to talk about data, and;
* ownership — e.g., who owns health data? who controls how “their” health data are used?
As you’ll hear stated in episode, “Health data really is for all of us… so for those who are interested, there's ways to get involved. And those who are less interested can have some trust that there are people like them who are involved, and therefore they they can worry about other things that might be more of a priority and interest to them… we all have a responsibility to understand the data that we're using.” So what are you waiting for? Tune in and join the conversation about your health data!
Meet our guests
Catherine Street is the Director of the Newfoundland and Labrador SPOR SUPPORT Unit and the Executive Lead for Public Engagement with Health Data Research Network Canada. She has worked in Patient / Public Oriented Research since 2014, when she was appointed Director, NL SUPPORT at Memorial University, St John’s Newfoundland and Labrador .
Frank Gavin chaired the Public Advisory Council of the Health Data Research Network (Canada) from 2019 to early 2024. He has been involved in healthcare and health research as a patient, a caregiver, and a member of the public, often in relation to children's health, since 1995. Frank taught English at Centennial College in Toronto for 30 years.
Kim McGrail is a Professor in the UBC School of Population and Public Health and Scientific Director of Health Data Research Network Canada. Some of her research uses large data sets to look at the effects of big policy changes such as changes in the way physicians are paid. She also has led deliberations with the public on how health data can be used to benefit people and communities.
This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit asperusual.substack.com
56 min