Power to the Patients

When waiting for the findings of a cancer test, “I had already made up my mind that I was definitely not going to get my results online,” says Maureen Barlow, a Toronto-based graphic designer. “I couldn’t imagine sitting in my living room on my laptop and getting my diagnosis without a doctor to decode the pathology jargon, skimming through the paragraphs of clinical notes until I found the dreaded word, ‘carcinoma.’”

The 48-year-old had been complaining to her family doctor about a strange ache in her armpit for more than a year when, finally, she was referred to a breast surgeon at Toronto’s Mount Sinai hospital who ordered her a mammogram, an ultrasound and then a biopsy to be done at the nearby Princess Margaret Cancer Centre. Princess Margaret is a part of the University Health Network (UHN), which is made up of five hospital sites and operates a secure website called myUHN that allows patients in the network to see their results and appointments in real time.

“At Princess Margaret, I was set up on the myUHN Patient Portal (which requires a registration code that is given to patients at their clinic) and told that the (biopsy) results would be available in 10 to 14 days,” Barlow says. “Six days after the biopsy and two days before my appointment with the breast surgeon, I got an alert from the portal saying I had new results.”

Barlow, who had long expected that she had breast cancer, stayed true to herself and waited until her appointment so she could go over the results with a doctor. But even though that’s the way it was always done before the era of digital technology, she felt he was hoping she already knew what they were going to talk about that morning “He said, ‘So you’ve seen the results?’ and then I told him that I had chosen not to look online and that I wanted the news from him,” she says. “He looked slightly weary and then, of course, delivered the expected blow, telling me that I had inflammatory breast cancer.”

This conversation was a critical part of Barlow’s cancer experience, she says; it was important to her to hear the details of the diagnosis and next steps in person. “I also needed to see his face to see if I could glean any good news. Unfortunately, he kept saying, ‘This is not good.’”

The upside to waiting for her results was that, once she had them, she was hustled over to a nurse right away to set up all of the necessary appointments, instead of reading the results online and then having to endure an anxious wait.

While getting scary test results online without medical guidance is not for the faint of heart, it turns out Barlow is in the minority when it comes to finding out health results in real time. Many people are taking advantage of the growing number of patient portals that electronically share health information with patients with the goal of giving them ownership over their own health care. Shared privately, the information can give patients the opportunity to check their health records for accuracy, find out when upcoming appointments are and prepare for them, and review facts they missed during talks with doctors.

“Ninety-four per cent of patients prefer to look at their results as soon as they are ready, even if they could be worrisome,” says Vasiliki Bakas, manager of the myUHN Patient Portal, citing results of a survey that looked at patient perceptions of myUHN and of the practice of accessing test results online. The same percentage feel better prepared for appointments and report better management of their care when they have early access to their results, and 92 per cent feel better able to make decisions about their care, the survey found. Ten per cent of patients found incorrect or outdated information in their portals, improving the safety of care by allowing them to point out the problems, a summary of the survey results stated.

The survey, completed by almost 10,000 UHN patients, was launched in fall 2017, about nine months after myUHN expanded across all hospital sites. Bakas notes that the findings echoed feedback received from patients after the initial launch of myUHN in seven early-adopter clinics. Meanwhile, a survey of nearly 800 staff members in early 2018 found 83 per cent in favor of patients being able to decide how they want to access their results. Seventy-six per cent believe that waiting for test results causes anxiety for patients, and also that portals improve patient-provider communication. Eighty per cent said the portal improved management of care.

PHYSICIAN WORKLOAD

But what happens after patients receive online results that leave them wondering about the gravity of their condition or how it will be treated?

“We have received anecdotal feedback that calls to physicians and their offices about results have increased,” Bakas says. “In our evaluation, 41 per cent of staff reported an increase in calls, 39 per cent responded neutrally and 20 per cent reported no increase.” Bakas notes that her team has developed patient and staff resources and training to help with these challenges.

Dr. Jeff Lipton, a medical oncologist at Toronto’s Princess Margaret Cancer Centre, says that while access to test results can sometimes be helpful because patients don’t have to contact him for results, his workload has increased since the portal’s inception because patients frequently contact him anyway to ask questions about those results — a situation that can be frustrating and taxing on the doctor-patient relationship.

“I generally have troubles with the portal because most patients don’t understand the results or how normal values are obtained, and do not see or understand the trends,” he says. “It generates a lot of anxiety and a million irrelevant questions, and then patients are jumping from the portal to the Internet and self-diagnosing.”

Dr. Lipton’s experience may be a clue as to why the province of Nova Scotia has taken a bit of a different approach to allowing patient access to test results. MyHealthNS, which launched in 2016, puts the control over information in the hands of doctors instead of patients.

“We have given family doctors the ability to manage their own practice settings for the release of results to their online patients,” says Andrew Preeper, media relations adviser at the Nova Scotia Department of Health and Wellness, adding that physicians are advised to explain possible outcomes to patients when tests are ordered as a way of managing expectations and reducing anxiety.

“Unlike some jurisdictions in Canada, where patients have access to results as soon as they are available from the lab, some doctors have set up a hold so they are sure to have reviewed the results before sharing them with the patient,” Preeper says.

A NEW DIMENSION OF QUALITY

Despite these challenges, patient access to test results signals a significant turning point in patient care, Preeper says.

“A major advantage is that the old ‘no news is good news’ approach to sharing test result information is replaced by a much higher standard,” he says. “Not only does this improve the level of patient involvement in their own care, but it adds a new dimension of quality to the patient experience.”

Online access to tests and health records also offers enhanced efficiency for both patients and physicians, since it reduces the number of appointments that have to be made, which opens up time for other patients, Preeper says. Other advantages, he says, include improved safety, since patients can check that their medical information is correct and push for follow-up care after receiving results.

One only has to think back to the tragic story of 31-year-old Calgary resident Greg Price, who died in 2012 of complications from testicular cancer that was diagnosed too late because of referrals to specialists that were never carried out and diagnostic reports that were never acted on. The well-known story also inspired a film called “Falling Through the Cracks: Greg’s Story,” which has become a part of the curriculum for first- year medical students at the University of Calgary and helped to launch a study into Price’s death by the Health Quality Council of Alberta (HQCA). One of the conclusions made by the HQCA was that patient access to electronic reports and the ability to track specialist referrals needed improvement.

“Patients who have their reports and results are better informed on their health status and can make more informed decisions about health care and manage their health,” Preeper says.

Anthony Machado* agrees.

“Having access to your test results is a great thing,” says Machado, of Toronto. “Sure, if I see scary results, I Google everything. But I want to know. I feel it softens the blow of bad news. And good or bad, I want to know. It’s my right as a patient.”

Machado was diagnosed with stage 4 hepatocellular carcinoma, an aggressive liver cancer, in September 2014 at the age of 39. After five radiation treatments over two weeks and almost two years of taking a daily oral cancer medication called Nexavar (sorafenib), he was told in June 2016 that he was cancer-free. Since then, he has had a scan every three months to check for relapse, and after every scan he logs into myUHN to find out the results. Last year, as he skimmed through the report, the word “metastasis” made him catch his breath.

“Sure, it was scary, but the anxiety of waiting between the test and the doctor’s appointment is way worse,” he says. “First, online access lets me find out things that put my mind at ease. For example, I had been worried about a strange pain around where my liver was, but I saw in the report that I had a fractured rib, which stopped my anxiety and saved me a trip to the doctor. There are three weeks sometimes between the scans and when I see someone. I can’t wait that long to find out. That’s three weeks of anxiety.”

While you might argue that knowing bad results for three weeks before seeing a doctor would make anxiety worse, Machado disagrees.

“You are worried already,” he says. “I want transparency. I want to see what they write. I want to know what’s happening. I also want a moment to freak out by myself without a doctor telling me how I should react.”

Machado does believe there are a few aspects of patient portals that could be improved. One would be for healthcare facilities to allow immediate contact between the patient and the treating doctor in cases where the diagnosis will cause significant worry and anxiety, such as in cases of cancer.

WHERE WE ARE HEADED

Digital health in Canada has been slowly coming of age over the last two decades, largely driven by Canada Health Infoway, an independent, federally funded, not-for-profit organization with a mandate of getting digital health solutions like electronic health records into use across Canada to help Canadians manage their health better.

Infoway, which collaborated with the government of Nova Scotia to develop MyHealthNS, is governed by 14 federal, provincial and territorial deputy ministers of health, and in 2018 it launched its Driving Access to Care strategy to increase the use of digital health solutions in Canada. The strategy includes ACCESS 2022, a movement to provide more Canadians with access to their personal health information and to digitally enable health services anytime and anywhere from the device of their choice. Infoway’s mandate means that comprehensive digital access, for records ranging from electronic medical records to test results, will eventually be available to patients and clinicians in every part of Canada. Currently, the extent of digital access across the country ranges from comprehensive, like myUHN in Ontario, to none at all, as is the case in Newfoundland, where Karen Pike lives.

Pike, who lives in Portugal Cove-St. Philips, just 15 minutes outside of St. John’s, relies on follow-up appointments with her doctor in order to find out test results. She can request results before an appointment as well as health records, but she has to pay for them.

“Copies of test results can be requested through a release-of-information application to the Health Information Services Department,” she says. “While the fees vary depending on what’s requested, it’s generally $10 for up to 25 pages and 25 cents for every page above that.”

Pike says that when online access comes to her province, she will definitely use it to keep up with medical tests and reports. However, she acknowledges that it’s not for everyone.

“I believe when it comes to access, it’s great for what you actually understand, but when it comes to results, we should leave it to the professionals,” she says, adding that it’s important to remember that they are experts and skilled at interpreting the results. “Ask questions, absolutely. You are your best advocate. But we, as patients, have enough to deal with just living with diseases. We can do without the additional role of having to worry about what exactly results mean.”

Despite Barlow’s initial reluctance to read her reports online, she now embraces the portal.

“After the initial shock wore off, the former scientist in me got curious,” she says. “I calmly went online and read the results on my terms. I was able to look up definitions and was comforted by the fact that my story to this point was on record, and that I had access to it.” She adds that patients don’t always get to see the actual test results or pathology reports, but it helps “to give the whole picture,” especially if you miss something during an appointment.

“It’s so easy to miss something that the doctor says during an appointment,” she says. “I’ve often read and re-read their clinical notes to clarify something I was unsure of.”

Barlow is now a cancer survivor, but because she is still on active treatment, she continues to use the portal for test results as well as appointment updates.

“I actually really enjoy being able to see these results and compare them to previous results as a graph,” she says.

In Preeper’s opinion, online access to health information is “a new frontier in health care.”

For Canadians like Barlow, Machado, Pike and others, it’s a frontier that promises to transform the way patients interact with Canada’s health-care system — and may improve the quality of care.