What you need to know as Alberta prepares to launch an online health portal

So, you're sitting in a tiny room at a medical clinic as your doctor stares intently at a computer screen at your medical records.

She clicks the mouse a few times, and then starts to type.

What, you wonder, is in there? What does it say? After all, it's your personal health information right there in black and white. Shouldn't you be able to see it?

Actually, you can.

Canadians have a right to see what's inside their medical records. It's well established in Canadian law. But it isn't always easy.

In most provinces patients have to ask their doctors for copies of their personal health information, which can take time and there can be fees attached. That means doctors can act as a kind of gatekeeper to our personal health information whether they want to or not. Patients need their cooperation to see it.

But that is changing.

Albertans are on the verge of having instant access to at least some of their medical records.

An online portal, called MyHealth Record, is set to roll out in the coming weeks. Alberta Health is not talking about how it might all work ahead of the official launch. It will only say it is in the final consultation process.

But we knowbased on information already sent to doctorsthat patients who sign up will be able to see the results of 59 lab tests, medication history and immunization records on their computer, tabletor smartphone.

• New app will let Albertans see their own health records

Alberta isn't the first province to make this kind of information electronically available to all patients. But it's on the leading edge.

So imagine, being able to log in and check out your own test results whenever you want. From your phone. A whole new way of keeping an eye on your own health.

In another five years we may look back and we won't believe this wasn't the standard of care.- Dr. IrisGorfinkel

But this also raises some questions.

What happens if you find out you have a health problem before you have a chance to see your doctor? What happens if you misunderstand the context of your results?

What should you know and when should you know it?

Quebec's experience

Quebec launched a province-wideonline patient portal last year.

So far more than 337,000 people have signed up for the Quebec Health Booklet. It contains a list of medications, lab test results andmedical imaging reports such as MRIs, CT scans and x-rays.

And the portal has fans in the medical community.

"I think it's a great thing because it makes the patients more involved in their healthcare," said Dr. Vincent Demers, vice president of the Quebec Medical Association.

"Patients are more informed these days, and they want to be informed."

Demers says his patients like it and the portal could potentially help prevent oversights.

"If for whatever reason a doctor misses an abnormal result, the patient can see it and go to the doctor and ask about the abnormal result," he said.

Butin Quebectest results are not released immediately. According to Demers, they're held for 30 days, which gives doctors time to set up appointments for people with abnormal results. The delay applies to everything from bloodwork to CT scans.

The Alberta system appears set to handle timelines differently.

While results for scans such as MRIs and CTs are not expected to be made availablein the MyHealth Record portal, or at least not right away, patients will have "immediate access" to lab test results.

A joint letterto doctorsfrom the College of Physicians and Surgeons of Alberta and The Alberta Medical Association stated: "MyHealth Records is designed to be easily understood by Albertans; patient lab results will include abstract information to help explain tests, and a call-in line will help Albertans with troubleshooting or any health-related questions concerning information found on MyHealth Records."

But seeing abnormal blood results right away could cause some real anxiety,according to Demers.

"You can discover something in your blood that is really serious like a leukemia. So if the patient is the first to discover that he has a leukemia and he goes on Google and checks that, and he doesn't have his physician in front of him to discuss it it can make the patient very anxious," said Demers.

He says the Quebec system, which delays results, may not be perfectbut it helps avoid that outcome. Physicians can offer context and answer questions and concerns.

"So I think a delay is a good thing even for the lab results," he said.

Dr. Google

"What's natural in the face of uncertainty is human beings tend to do things to increase certainty," saidKim Lavoie, a clinical health psychologist and researcher at the University of Quebec inMontreal.

We've all been there. Or, at least know someone who has. Something is off. You're not well. So you whip out your phone and start searching for answers.

"They're going to turn to the internet and the internet is full of great information and it's full of terrible information," said Lavoie.

WhileAlberta's patient portal is expected to come with links to information about the tests and the results, Lavoie wonders if that's enough.

What happens if someone discovers that their blood sugars are too high and they can't get in to see their doctor right away?

"You don't want patients with pre-diabetes to go and do homeopathy, for example, because some random website says this is going to decrease your blood sugar levels, which is nonsense," she said.

Alberta, she says, should consider a delay similar to Quebec and have a plan to manage patients who are getting results without medical support.

According to Lavoiethose peoplecould become deeply concernedand, as an unintended consequence, jam up emergency rooms and walk-in clinics.

"In general I think [the portal] is a great idea. But you can't just give people information and leave them powerless or helpless to do something about it," she said.

In Nova Scotia, doctors have more control over when and how patients see their records.

'Its time has come'

Nova Scotia launched a scaled down version of its ownin 2016.

Family doctors can sign up and invite interested patients to join too. When test rests are in, physicians can control when the information is released to patients.

"Most routine lab stuff can be released immediately. Other tests such as CT scans, MRIs, pathology reports, the physicians have about five days to release that and it gives them a chance to look at the result so they can get in touch with the patients," said Dr. Gerard MacDonald, chair of the information technology steering committee with Doctors Nova Scotia.

Patients have a right to access this.- Dr. Gerard MacDonald

So far about 300 physicians or roughly one quarter of the family doctors in Nova Scotia have signed up.

"I think initially there were fears and a lot of those were fears of the unknown," said MacDonald.

In that province's system, people can get information, but also chat with their doctor's through an e-messaging tool. MacDonald says doctors were concerned at the outset that they would be bombarded by messages from patients. But it hasn't turned out that way.

"We have done some follow-up surveys with physicians," said MacDonald. "The concern about the workload really has been overblown."

There were also early worries patients would become anxious if they were confused about test results. According to MacDonald that hasn't been a big problem yet either.

"Just a small percentage of patients are going to be worried and concerned. But whether you have a portal or not, that's still going to be the case," he said.

MacDonald welcomes online access and says patients will eventually want to see their data more quickly than they can in Quebec.

"Its time has come," said MacDonald. "Canadians demand to have access to their records. Just like they can access their bank records. Patients have a right to access this."

Several other provinces are at various stages of developing province-wide online patient portals. Some regional health authorities and hospitals already have their own versions in place.And patients in some provinces can also access results electronically from private laboratories.

Providing direct access to personal health information is a move many experts argue will push Canadians to be more active participants in decisions about their own health.

'They don't have to be afraid of the doctor'

Dr. Iris Gorfinkel, a Toronto-based family physician, would like all Canadians to have full access to their records within a decade.

Gorfinkel wrote a commentary for the Canadian Medical Association Journal last year, calling on all provincial governments to mandate patient portals.

Shebelieves patients should be able to log on and see their entire medical record with no delays.Having some understanding of their results ahead of time, she says, allows for a better conversation.

"They don't have to be afraid of the doctor because the doctor isn't the sole keeper of the records. They're empowered with that knowledge and now that allows them to ask questions and fill in the gaps in that knowledge to address their worst fears," said Gorfinkel.

The power dynamic, she says, is shifting.

"We need to do everything we can to equalize the playing field."

Gorfinkel believes the benefit of immediate access to medical records outweighs the potential harm of seeing an abnormal test result before you can talk to your doctor.

"I don't call that anxiety. I call that patient engagement," she said.

"This gives the potential for patients themselves to challenge doctors and say, 'well wait a second, what about this aspect?' It's a different level of conversation."

"Hopefully in another five years we may look back and we won't believe this wasn't the standard of care."

And, Gorfinkel points out, no one is forcing you to look at your chart.

You only click on it if you want to.