Policy Modernization Group
The Policy Modernization Group (PMG) is a collaborative effort aimed at modernizing health data policies in Canada. Comprised of approximately 45 public/private/non-profit stakeholders from across the health data ecosystem, the PMG advocates for a health care system grounded in modern data policies across all therapeutic areas, while remaining as open as possible and as regulated as necessary.
The Policy Modernization Group (PMG) has authored “A World Class Health Data System for Canada: Framework for Action” to support the recommendations of the Pan-Canadian Health Data Strategy’s Expert Advisory Group. This paper advocates for the creation of an optimized and world-class health data system in Canada by highlighting examples from other jurisdictions and encouraging healthcare stakeholders to advocate for a better system. The paper provides specific suggestions for getting involved, such as including diverse voices in the conversation, engaging with policy and decision-makers, becoming advocates within organizations, and promoting health data literacy.
The PMG looks forward to continued dialogue and welcomes new and interested individuals who are aligned with the need for a better data-enabled Canadian healthcare system.
All healthcare stakeholders have the opportunity to advocate for the healthcare system we all deserve. Policy makers and government should continue to bring people into the conversation intentionally, for meaningful and sustained public engagement and involvement. This will help us to better understand issues that are of immediate concern to users of the system, and will provide a forum for discussion regarding the power of data integration. Specific suggestions for how you can get involved follow:
1. Bring people into the conversation intentionally, for meaningful and sustained public engagement and involvement. This will help us to better understand issues that are of immediate concern to users of the system, and will provide a forum for discussion regarding the power of data integration.
– Specifically invite and include all health, including patients, community members, caregivers, academia, non-profit, private sector (industry, insurance), government(s), data scientists, etc. to the table for regular and ongoing consultation.
– Work with other groups (i.e., Personalized Health Care Collaborative, Policy Modernization Group, patient advocacy groups, etc.) to integrate the patient/citizen voice into the conversation.
– With patients and people, develop representative use-cases (i.e., patient archetypes) within our health system to help amplify the message of this paper, as well as the Pan-Canadian Health Data Strategy Expert Advisory Group reports through the powerful voices and channels of patient advocates.
– Seek opportunities to engage with policy and decision makers at the governmental and institutional levels, to ensure your voice is being heard.
2. Become advocates within your own organizations in an effort to stop reinventing the wheel, and instead bring people together to tackle this strategy.
– Reach out to the Policy Modernization Group members to learn how you can help, or to make new connections.
– When conversations arise in your organization about data infrastructure, data standards, learning health systems, or other related topics, point your teams toward the Pan-Canadian Health Data Strategy Expert Advisory Group Reports (https://www.canada.ca/en/public-health/programs/pan-canadian-health-data-strategy.html)
3. Become a champion of health data literacy to help spread a foundational understanding of how integrated, accessible health data can improve health outcomes for all people living in Canada.
– Talk to your health care practitioners about your questions and concerns re: data sharing.
– Tweet your support for the Pan-Canadian Health Data Strategy
– Share these websites with your colleagues and friends: www.myhealthdatapath.ca, www.datasharingcounts.com, www.datasaveslives.eu
If you or your organization want to learn more about the PMG and ways you can contribute, please contact any of Executive Committee members listed below:
Dvorah Richler https://www.linkedin.com/in/dvorah-richler-48a6794/
Ayat Salman https://www.linkedin.com/in/ayatsalman/
Christina Weise https://www.linkedin.com/in/christina-weise-630a559/
Ryan Wiley https://www.linkedin.com/in/ryan-wiley-0613725/