Pan-Canadian Health Data Strategy is released! A blueprint for major change that could revolutionize healthcare - May 3, 2022

[A Former User]

I have been privileged to be the citizen member on the Expert Advisory Committee on the Pan-Canadian Health Data Strategy (pCHDS) commissioned nearly 18 months ago by the Provincial/Territorial/Federal deputy ministers of health and steered by the Public Health Agency of Canada with Eric Sutherland as an extremely able Executive Director. I have felt a full participating member of the team and feel this is one of the potentially most impactful things I have been involved with as a patient partner.

We have seen during COVID that health data does not flow and follow the same standards and timelines making it extremely difficult to manage the pandemic nationally -- or even regionally. But many of us have already known this as we have struggled as patients and caregivers. Essentially we have an infrastructure that is provider-centric NOT person-centric. This is a fundamental barrier to person-centred care in spite of all the good will in the world. Patients and providers are all fighting upstream against this barrier which contributes to patient harm and provider burn out.

This 3rd report from the pCHDS lays out a road map that includes a proposed Canadian Health Data Charter including priniciples**.** There are recommendations indigenous data sovereignty, governance, trust, policy and data stewardship, interoperability and common standards, and finally data literacy. If the decision-makers are not data literate, they may make unfortunate decisions on our behalf; if we, the public are not data literate, we may push for and vote for decisions that do more harm than good.

Stay tuned! In June PAN will have a PAN Parle to discuss digital health and we will start the conversation on the digital revolution in healthcare, our role as patient partners and what we need to learn more about to influence change.

The three pCHDS reports can be found here:
Report 1: https://www.canada.ca/en/public-health/corporate/mandate/about-agency/external-advisory-bodies/list/pan-canadian-health-data-strategy-reports-summaries/expert-advisory-group-report-01-charting-path-toward-ambition.html
Report 2: https://www.canada.ca/en/public-health/corporate/mandate/about-agency/external-advisory-bodies/list/pan-canadian-health-data-strategy-reports-summaries/expert-advisory-group-report-02-building-canada-health-data-foundation.html
Report 3: https://www.canada.ca/en/public-health/corporate/mandate/about-agency/external-advisory-bodies/list/pan-canadian-health-data-strategy-reports-summaries/expert-advisory-group-report-03-toward-world-class-health-data-system.html

[A Former User]

Thanks, JoAnne. I can't stress enough how important it is that we take advantage of the opportunity the pandemic has provided and the guidance of this report to make significant changes to re-align healthcare around the individual rather than the providers and admin needs of the funders.

[A Former User]

Extremely heartening to see this initiative created and moving forward. Struggles are showcased in local and national social media groups and it's important the public know they are being heard. Will share! Thank you so much for your hard work!