Call for Applicants (deadline July 13) Advisory Council for "Health Data Research Network Canada"

[A Former User]

(I hadn't heard of them either!)

Health Data Research Network Canada is "a network of leading federal, provincial and territorial organizations that hold and manage health data".

This organization is brand new in 2020! Learn more at hdrn.ca

Recruiting is happening NOW for the inaugural 12 to 15 member Public Advisory Council.

Here's the LINK to apply for appointment. Deadline Monday July 13.

What a great opportunity to get involved, right at the start to set a high standard for the citizen and patient voice. THAT data is OUR data! And the policy and practices informed by research will affect everyone's life and public health for our whole society.

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[now this is my opinion, also my emphasis added] Looks to me like there is a BIG need for a strong public lens on their mission, stated as: "To improve health and well-being by making data accessible to researchers, institutions and government agencies across Canada for research that will foster improved health outcomes for all Canadians."

I think data accessibility needs to be informed by the people whose data it is! Please consider bringing your voice forward as a member of this important Public Advisory Council!

[A Former User]

I applied to Health Data Research Network Canada.

This group won the CIHR competition to put together a health data consolidated approach for health researchers in Canada. The hope is to remove the jurisdictional barriers that require a contract for data with each province/territory. This effort is to provide a sole point of access for researchers saving time and money. It could be more than that with greater vision. We are needed to supply that vision.

PAN was on a competing bid that lost to this group but we, as patient partners, really should be involved as individuals at least.

Decisions about priorities, standards, privacy and consent will most likely be part of this exercise. It does help if you are somewhat knowledgeable about data, databases and are not tech averse. Having said that, it still should not stop you from being involved.

Warning, the application is lengthy and detailed with mostly text boxes.

Alies