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Is Queen’s Park set to change health records rules? One expert thinks so

It was not a proclamation or even confirmation, but more of a hint that big changes might be afoot in Ontario when it comes to citizens being able to access their health records electronically.

Speaking last week at the IdentityNorth Annual Summit 2022 in Toronto, Rosa Caputo, the chief executive officer and founder of KeyData Associates, an identity management consultancy, said there is a need for “citizens to be able to access their records electronically.”

During a Q&A session with conference co-chair Krista Pawley, she said it “just makes so much more sense to have them all electronically for historical reasons, for accessibility, for sharing, for collaboration. It’s just better overall, so I just think it’s around the corner.”

Pawley responded by saying she is “very excited by that,” citing the example of a person who is admitted to hospital where tests are carried out, and then is released: “Something happens two weeks later, and they have to redo all the tests because paper records of the results were sent off someplace in a big box. It’s not fun, so that’s a really big transformation.”

Of note is that KeyData is working with the provincial government on the Enterprise Public Secure project, a new platform designed to make it easier for Ontario residents to access provincial government services and sites online.

Patricia Meredith, a Toronto-based global thought leader, author and consultant in the field of strategic governance, who attended the session, said the problem right now is that all patient information sits in a hospital, and no integration exists between a practitioner or a medical lab.

“What I took from what she said, is there’s something going on that would bring it all together, because she was too enthusiastic,” she observed.

“It would be great. Personally, I think the issue is, who owns the data because in the past, medical data was owned by the doctors. But I think the doctors have come far enough that they’re prepared to share ownership of the data with the citizens.

“And so, if that hurdle is overcome, and the government has the lever – you don’t get paid until I get the data – I think it’s a solvable problem, but it would take somebody in the government saying, ‘you will do this.’”

Meredith, a former senior banking executive who chaired Canada’s Task Force for the Payment System Review, which was formed 12 years ago to review the country’s payment system, said when it comes to electronic patient records, everybody still talks about the 2009 eHealth scandal in Ontario and how it failed.

“We spent a billion dollars and we got nothing,” she noted. “Well, that was the wrong approach. We should have taken a decentralized approach, not a centralized approach, because people are really concerned about having one place where all their data is. It could be hacked and for whatever reason, you could have people accessing your health data for nefarious purposes.

“To get it done, it has to be a collaborative effort. The technology is there, it’s been there for decades. What isn’t there is the political will, framework and ethical standards that would make it possible for the private sector, the public sector, the non-profit sector, to just do it.”

Meredith added that a key priority must be the formation of a Privacy Act that relates to health records: “Unfortunately, the old way of developing legislation isn’t working to give us that. We need clear rules in order to write standards, in order to implement standards, in order to ensure compliance with standards.”

Ontario residents, she said, must also be given a voice so they can say, ‘I can live with that. I can’t live with that. This is data about me, I need to have some assurances, in what the policies are.’ Until the government creates a forum that gives us the say, and gives them a clear indication of what the majority can live with, we’re going to have this fumbling around.”

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