Canadian patients should have online access to their medical records, some doctors say

When AmeldaWright, 78, getsa new test as part of hercancer care, her daughterlogs into her patient record from home so she can tell her the results.

"You do feel more in control. You're part of the care," Yvonne Wrightsaid.

The hospital treating her mother is part of theUniversity Health Network in Toronto, part of a patchwork of Canadian health-care centresthat have started adopting"patient portals," which allowpatients or someone else they authorize to access their health information online.

Such portalsshould be universally availableas part of patient careacross Canada, two Toronto doctors argue in a commentary recently published in theCanadian Medical Association Journal(CMAJ).

Provincial and territorial governments, which have jurisdiction over health care for most Canadians, should mandate centralized access to electronic medical records, wrote family physician Dr. Iris Gorfinkeland emergency physicianDr. Joel Lexchin.

"Such a commitment to health information transparency would herald a new era in patient empowerment," they said.

"Records accessible to patients need not be all inclusive, but should, at a minimum, include the primary care physician's cumulative patient profile."

That includesa summary of a patient's "social, family, medical and surgical history; substance use; current medications; previous drugintolerances; and drug allergies," they said.

Consultation notes from specialists, radiology and lab reports should also be available.

That kind of information wouldempower patients, change the nature of the dialogue withphysiciansand help them stay on top of their own health care, Gorfinkeltold CBCNews.

Patients already entitled to see records

The dataavailable to patients in most existing portals including the one Gorfinkel provides to her own patients is currently quite "limited" and just a starting point, shesaid.

Ultimately, Gorfinkel said, patients should be able to access the same information their primary care provider would have.

"When did I last have my mammogram? OK,here's my mammogram results. What does my bone density show? You know, when was my last colonoscopy? The standard family physician things. What vaccinations have I had?

"I now have full access to it 24/7. That's the idea. To try to bring that to patients."

Doctors want Canadians' medical records to be more accessible

6 years ago

Duration 3:11

Doctors want Canadians' medical records to be more accessible, via so-called patient portals. The online portal allows patients and authorized users to access their medical history including blood tests, X-rays, scans and medications.

Under Canadian law, patients are already entitled to see their records and charts, whether they are paper or electronic. But the process of getting access is generallycumbersome, said Kerry Bowman, a bioethicistat the University of Toronto.

"The information may belong to the patient, but the physical chart itself, including itssoftware and its components,is in the ownership of the hospital or the health-care facility," hesaid. "So what happens is you get a bit of abureaucratic structure in which you have to do paperwork and wait."

Patient portals "willabsolutely help" address that problem,he said.

"From an ethical point of view, it's the right way to go. From a transparency point of view, it's the right way to go."

But Bowmanalso sees serious risks and problems that need to be addressed.

"The first thing I would worry about is the security of the information andconfidentiality," hesaid.

"A portal is just what it sounds to be it'san opening in the system. And with that openingcomes increased risk forunauthorized entry of some kind."

Jargon, anxious patients among challenges

Another challenge, he said, is making sure patients understand what they're reading especially given the extensive jargon used in the medical world.

"It may not have to be written in layman's terms, but it's going to have to be written a lot more clearly than it is now. There's no question about that," Bowman said.

Bowman said another issue that will arise is how patients handle the information they access.

"It may put a lot of stress [on patients]," he said. "If you take the example of a patient getting ... their final results related to, you know, abiopsy, let's imagine, on a Friday night. What is that patient, what is she supposed to do with that information? What are her options?"

Patients will react differently

That stress is a "potential downside," Gorfinkelsaid, but being armed with information in advance could also prompt patients to do some research andprepare for an informed conversation withtheir doctor.

"By the time you come speak to your family physician about it, you're going to be knowledgeable," she said. "[Patients are]able to say:'Wait a second. I hadthis result ... aren't we going to do something about it?'"

Knowing that patients will see their records will also help them holdphysicians accountable for maintaining accurate documentation, she said.

"Doctors will be more cautious about what they write, how they write," she said.

"There's literally thousands of facts on any given chart.So if I don't have my facts right, that could potentially negatively impact patient care."

Both Gorfinkel and Bowman acknowledge that not all patients will embrace the idea of accessing their medical information onlineor otherwise.

"Individual reaction will be quite different. You're going to have patients that say:'I wouldn't open that portal for anything.... It's going to upset me.I'm not going to understand it,'" Bowman said.

"You're going to have other very anxious people who are going to read it constantly ... and a lot of people will be somewhere in between."

'It helps you feel better'

But evenpatients who don't want to look attheir information will benefit from having it all collected electronically in one place,Gorfinkel said.

In an emergency department, for example, patients often can't remember all the medication they are on or provide their entire medical history.

"If portals to primary-care charts were universal, then patients ...could simply say:'My doctor has a patient portal.Here, let me give you my username and password so that you can see what my primary care physician sees.'"

For Yvonne Wright, the portal system isn't perfect. Doctors need to make sure what they write isunderstandable to the patients, she said, or perhaps delay posting critical results until they can see the patient in person to explain what they mean.

On balance, having medical records at her fingertips hashelped Wrightand her family deal with her illness.

"I think when you're in control of your own health, ithelps you feel better,"Yvonne Wrightsaid.