Toronto hospital trial allows patients to see their medical records — and control who else sees them too

Toronto hospital trial allows patients to see their medical records — and control who else sees them too

If you’ve ever been curious about your health records, odds are you haven’t been able to see them.

It’s not because anyone’s hiding them. It’s just that they’re likely in a bunch of different places. Your family doctor will have records of your physical, the cottage country hospital you visited when you wiped out on the dock will have the x-ray of your broken arm, and the hospital downtown will have the records from your hernia surgery.

Your doctors have access to the information. But not you, the patient.

Now, thanks to a blockchain-based project being worked on at the University Health Network, that could be changing.

The key part of the project, which is in the trial stages, is a mobile phone app which allows patients to control who sees their data and when. It’s a collaborative effort between UHN, IBM, eHealth and the Blockchain Research Institute. When a doctor or researcher — or your worried mother — asks to see your data, a notification pops up on your phone. Say yes, or no, and access is granted (or not).

“It’s difficult for patients to have a unified view of all of their data, of all of the providers who sit in different places, in different organizations,” said Dr. David Wiljer, UHN’s executive director of Education Technology Innovation. “There’s no place where they can go from their primary care, their specialty care, emergency care, community care.”

Wiljer said patients ask time and again, “why can’t we just see all of our data in one place?”

They just want to go to one place, see the data, be able to access it, and share it with whomever they’d like, he said.

Once the app is up and running, it would only offer access to UHN-produced data. Eventually, though, Wiljer sees potential for similar technology to allow patients to control access to their data, and see it in one place.

That’s largely because blockchain technology offers better security than existing record-keeping systems. Sending all those records back and forth without solid security would be a tempting target for hackers or identity thieves.

“Blockchain creates the ability to grant trusted access, and audit it,” said Wiljer. “There’s a record created of exactly who accessed the data, when and why.”

Blockchain works by creating a record of data, and then sending that record to trusted “nodes,” or computer servers. Because those blocks of information are sent to several different nodes, it harder for hackers to alter the records and get away with it.

While some public blockchain systems have been hacked, a closed network like those used by hospitals would reduce the odds even further, Wiljer noted.

“We’re talking about a closed environment,” Wiljer said.

In the most high-profile so-called “51-per-cent” attacks on public blockchain systems, hackers gained control of more than half of the trusted nodes in a network, allowing them to temporarily change the records. In the case of blockchain-based digital currencies, that allowed them to effectively spend the same money twice.

That can’t — and won’t — be allowed to happen with something as vital, and private as health records, Wiljer stressed.

“Security is a priority for us. It’s our duty to the patient,” said Wiljer.

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A blockchain-based app also offers the potential for patients to grant access to their data to anyone they want, from concerned family members, to doctors treating them, and even medical researchers. Currently, getting individual consent to share data with researchers can be a cumbersome, time-consuming process, Wiljer said.

“It’s not really feasible to do that individually. Whereas if you had a transaction-trusted network … you could reach out to patients and say ‘hey, we have this research study, are you interested?’ They could give permission for a time-limited period.”

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