A new report on a Connected Data System

[Alies Maybee]

Roche Canada is excited to share their report, ‘roche-connected-health-data-en-final.pdf Achieving a Connected Data System’, created with Santis Health.

Connected health data is a powerful tool that can not only empower patients, improve health equity, and support health care decision-making - but can also drive access to innovation and economic growth at a critical time for Canada.

They assessed health data connectivity across Canada and the opportunity in front of us is monumental.

Key findings show:

• Canada has a strong digital and legal foundation for sharing data, but is lagging behind international peers.

• Despite challenges, many provinces are leading innovative approaches, offering ample opportunities for learning and collaboration

It’s time for Canada to break down barriers and capitalize on its potential.

Read the full report to learn more.

[Debra Turnbull]

@Alies-Maybee Very interesting report.

What caught my attention, though lightly mentioned, was how 'patient-centric' efforts (p.14-15) both internationally and provincially (N.S. OPOR), score highly for data connectivity. That patient focus can drive change.

BUT - where is the patient voice in all of this? Others are speaking on our behalf? I see the institutional bias of the report.

A decade ago, Ontario had proposed a Patient Consent Module that would capture patient consents... but that has gone silent. P.32, under Public trust and data systems literacy, there is the statement: "...and that individuals can opt out of any of this."

Opt-in, opt-out, consent... could this be the beginning of patient consent in data systems? How do we get included and define this specification?

[Sandra Holdsworth]

@Debra-Turnbull interesting history you share. I'm interesting I'm learning more about the Patient Consent Module.

[Alies Maybee]

@Debra-Turnbull and @Sandra-Holdsworth I have been talking with folks at Roche about these issues. They are open to the patient voice but newish at it. I should be having more meetings in Oct re how to go about it at Roche so stay tuned. It is important that we don't leave industry out.

With regard to the consent module @Debra-Turnbull, as you might remember when we were working with CIHI, we were strong on the need for it as part of the basic patient record. Let's continue to keep an eye on this too.

[Debra Turnbull]

@Sandra-Holdsworth
Hi Sandra, thanks for the question. It forced me to go dumpster-diving into my old school notes.

This all comes from the Ontario governments efforts to connect the province's healthcare providers through their Connecting Ontario program. By having hospitals upload their information to the provincial repositories, it allows primary care clinicians to web portal in; to look up their patients' hospital stays. In this way, family doctors could get a 'bigger' picture of their patients. In those efforts, 10 yrs ago, in their Conceptual Information Model, they referenced an Entity called the "Information Consent Directive", and a few other things.

In an effort to give you a current version of the information, I went back to the eHealth Ontario website... that's when I spotted this:

Looks like the Ontario government is no longer going to develop/support a digital Patient Consent module. I have to say that I am shocked and extremely disappointed. After all those promises... and still, no mention of the reasons for canning the project.

[Debra Turnbull]

@Alies-Maybee Honestly, I had forgotten. There was so much information - I was relying on the group to keep me on track.

Right... time to make lemonade!

[Alies Maybee]

@Debra-Turnbull

[Debra Turnbull]

@Sandra-Holdsworth Found it!

This is from CIHI's presentation on Sep.24:

https://www.cihi.ca/en/connected-care/canadas-health-data-content-standard-and-architecture

If you look at the 2nd row from the top; left side, the light blue square called 'Legal', there are 2 items:

• advanced directives, and

• CONSENT

The priority has moved from Ontario and is now under the national 'umbrella'.

[Alies Maybee]

@Debra-Turnbull I believe I will be talking with folks at Roche in November and will definitely be talking about how we all can be included.

[Alies Maybee]

@Debra-Turnbull good sleuthing! This is helpful.