Vital - linking hospital data across Canada funded

[Alies Maybee]

I am excited to share this announcement of $100 M for the Vital project which will connect all hospital data in Canada.

This lays the foundation for connected care in Canada. This also means potentially a one stop shop for researchers and innovators. The benefits will be enormous.

PAN is in talks with the Vital team around our participation in building a patient infrastructure in the project to ensure it reflects our values and needs -- so stay tuned!

[Debra Turnbull]

@Alies-Maybee

I just wrote about this for my OHT.

This VITAL platform is so cool! It keeps the HIS data in the silos, but passes around the query. I've never seen this type of design before.

Now that the patient data stays locked in its silo - patient consent for research will become necessary.

But, how will the system guarantee that?
How do we trust it?

[Alies Maybee]

@Debra-Turnbull PAN needs to work on what we would like to see for a consent framework from the consenter point of view otherwise this will be a mess.

[Debra Turnbull]

@Alies-Maybee

Right! So, Chris mentioned the GRIIS_CLARET project as a starting point. If you scroll down the page, you'll see the 3 project Phases. Bear-in-mind GRIIS is part of the VITAL project/endeavour.

Calling @Chris-Johnston !!

It's Dr. Éthier's consent project out of U of Sherbrooke, QC. It might be worth reaching out to Dr. É and get some ideas. We could definitely use this as a lauch point.

As you remember, I can still speak some French - badly and please don''t ask me to write in French. (Remember your hat?) I would not want to offend anyone... But, I can muddle through.

[Debra Turnbull]

@Alies-Maybee @Chris-Johnston

Here's some ideas from GRIIS on their consent project - CLARET.

And a study...

This could be used as a starting point. What is interesting is that there is such a thing as "excessive transparency"... Too much information?

[Chris Johnston]

@Debra-Turnbull @Alies-Maybee

Thanks for sharing these Deb! I think the GRIIS-CLARET model has a lot to recommend it as a starting point to build a pan-Canadian consent framework.

I particularly like the communication tools they developed for Phase 1 including:

• the Meta Consent Comic Strip

and short animated videos that explain:

• using health data for research and

• how a consent portal would work

[Debra Turnbull]

@Chris-Johnston @Alies-Maybee

I think the GRIIS-CLARET model has a lot to recommend it as a starting point to build a pan-Canadian consent framework.

Agreed. A framework and possibly a national portal.

I like the idea of the video and comic, however, the content is Québec specific. Would need to be tailored for a national audience.

[Chris Johnston]

@Debra-Turnbull

Of course, but it demonstrates how these concepts can be conveyed quite simply.

[Debra Turnbull]

@Chris-Johnston
True.

I have thought along these lines as well - creating something simple for PAN audience. Unfortunately, I don't think PAN has such tools.

[Chris Johnston]

@Debra-Turnbull

I don’t think it’s necessary for PAN to have the tools. The fact that GRIIS has created a useful conceptual framework together with public-facing artefacts can act as a reference to demonstrate the feasibility of a consent infrastructure. In working with projects such as Vital and the Collaboratorium, it provides a great starting point for discussions without requiring us to reinvent the wheel. Instead, we can focus on how to scale, expand and develop the concept as a pan-Canadian architecture. Essentially, GRIIS broke the ground and planted the seed, now PAN can cultivate and grow the Idea, influencing appropriate bodies to bring it to meaningful fruition.

[Debra Turnbull]

@Chris-Johnston

Ah! Now I see your point - hand off to the Collaboratorium and let them produce it.

My only concern with some of these communication items, is they come across as "goofy". I realize that this seems to be the current form of communication to appease the public (maybe it's an equity characteristic). It lacks a certain "credibility" factor for me. (I don't know... maybe I've spent too much time in the sciences.)

[Chris Johnston]

@Debra-Turnbull

Totally get that - I'm not sure it's about appeasing the public so much as underestimating them - the overly simplistic approach sometimes riles me. However, video animations and comic book style explainers have proven very popular across different ages and demographics, and they're certainly less intimidating than the usual academic papers and bureaucratic reports.