In recent years, more and more patients around the world are logging into their health records online—but few Canadians have access to this service. Patients can log into a secure online portal and see lab reports, doctors’ notes, imaging results, vaccination and allergy information, and more. Proponents believe the access will lead to better patient care and empowerment. Patients can understand more about their condition and medical history, and they can correct information that’s inaccurate.
Generally, the way patient health records work is information on a patient’s electronic medical record (EMR) is copied over to a patient-facing, online version of that record, called a patient health record. All patients in Sweden and Finland can access their health records online, and in many other countries patient-accessible medical records are available to a limited degree.
Currently, only a small percentage of Canadians have online access to their medical records and these records are incomplete. That’s because in many cases, patient health records are being adopted by individual institutions. So patients might only be able to access information about medical care that took place at a specific centre.
In Nova Scotia, around 25 percent of family physicians have signed on to MyHealthNS, a patient health record launched by the provincial government in 2012 that allows patients to see their medication list, specialist reports, lab tests, diagnostic imaging results and more.
In Ontario, LifeLabs now allows all Ontarians who get testing done in their clinics to access the results online. And 19 hospitals are currently using MyChart, a patient health record developed by Sunnybrook in 2006. In addition, all hospitals in southwest Ontario are in the process of adopting MyChart, according to Sarina Cheng, director of MyChart at Sunnybrook. Last month, Sick Kids launched its own version of a patient health record, starting with four of the hospital’s clinics.
Alberta, meanwhile, is developing Connect Care, which will allow everyone in the province to access lab reports, prescription records and other medical information online. The government expects it to be fully operational in five years.
Does access to online health records improve patient safety?
Online patient health records are relatively new, and a review of 45 studies found “insufficient” evidence that patient health records improve health outcomes. But patient health records are new, and improvements that result from being able to access medical data could only become evident by studying very large populations over many years.
Whether or not it improves their health, patients appreciate having easy access to their medical records. Reviews have found that patient health records improve patient-provider communication and increase patient satisfaction. When MyHealthNS evaluated the initial pilot of its patient health record, involving 30 doctors and 6,000 patients, 98 percent said they wanted to continue getting results online, and 85 percent said it made a positive difference in their health management, says Stewart Cameron, a family doctor in Halifax who is an adviser to Nova Scotia’s provincial health department on the MyHealthNS patient health record.
Proponents of patient health records think patient access to records will have many other benefits. For one, their adoption could lead to more up-to-date and accurate records. Patient health records allow for a second set of eyes on the medical information—the patient’s. As the person who has the most at stake to see their records, a patient might notice mistakes or omissions. In some cases, patients can also add information. At Sick Kids Hospital, for example, patients and parents who use the patient health record “can input their allergies and the medications they’re taking.” Providers are then sent these additions so they can update the master record, where appropriate.
In one small study of the implementation of a patient health record, medication lists were frequently flagged as inaccurate by patients in a medical feedback form. (Inaccuracies included medications listed that had been discontinued and dosages different to what patients were taking). However, only 30 percent of patients sent in an electronic medical feedback form.
Patient health records might also reduce serious medical error, though this hasn’t been studied. In rare cases, doctors fail to properly inform patients of critical test results, and this can lead to serious harm and even death. According to the CMPA there were more than 500 cases, over a five-year period, involving one or more breakdowns in the follow-up of a critical test result. Cameron in Halifax hopes that widespread adoption of patient health records would reduce the number of critical test results that don’t get communicated to the patient.
Cameron has seen first-hand how patient health records can reduce documentation errors. He once received a consultation report from a surgeon that said the patient had an assessment and a colonoscopy. When the patient saw the report on his patient health record, he told Cameron “that’s not actually what happened.” So Cameron contacted the surgeon. Turns out, he had dictated the information on the wrong person. Though preventable and rare, such errors do occur.
Finally, access to their own medical data also allows patients to be more involved in their care, and that can lead to improved testing and treatment decisions, according to Charles Harper, executive dean of practice at the Mayo Clinic, and a neurologist in Rochester, Minnesota. Harper is currently overseeing improvements to Mayo Clinic’s patient health record, which is available to all of the organization’s patients—1.25 million have registered since it was launched in 2009.
In Harper’s experience, patients who access their health records online have more informed questions and ideas for next steps when they see him in the office. They’ve had time to access their test results before the appointment, and do their own research about what those results mean. “It makes that [clinic visit] time much more valuable,” he says. “It creates much more of a partnership.”
Cheng has also seen patients become more empowered due to the patient health record, with many users logging in multiple times a month. “Patients are giving other physicians access [to their patient health record] and getting second opinions,” says Cheng.
Cheng adds that the patient health records help providers educate patients on how to improve their health. “We can push out information to one person or 1,000 people or only people that are dealing with certain conditions,” she says. That could include reminders about breast cancer screening or information on a new diabetes management tool.
Why aren’t online medical records more widespread in Canada?
While the technology to make it easy for doctors to share medical records online has been around for decades, the adoption of patient health records has been slow in Canada. Cost is one of the biggest reasons, says Sacha Bhatia, director of the Institute for Health System Solutions and Virtual Care at Women’s College Hospital in Toronto. “For a lot of hospitals or physician’s offices where resources are scarce, the question is, ‘Is this the best use of the resources that we have… especially if there’s not a huge number of people who will use it.’” According to Bhatia, around 20 percent of patients at Women’s College have signed up to the hospital’s patient health record, which was launched in late 2016.
Patients might not be signing up in droves yet because patient health records are new and it takes time for word to spread that they exist, and for patients to see the benefits, just as it has taken years for people to adopt online shopping and online banking in large numbers, explains Michel Chiasson, a family doctor in Chetticamp, Nova Scotia, and early adopter of MyHealth NS.
Another reason for low uptake is the patient health records might be limited to the care provided by a single institution. For patients to be able to access their complete records, all care-providing institutions need to be using patient health records, ideally ones that don’t require separate log-ins by the patient. “If patients have to log into three different portals, that becomes confusing,” Bhatia explains. It’s up to the Ontario government to provide the regulatory framework so that existing patient health records can be better integrated, he adds. (Currently in Ontario, only MyChart allows health records from multiple institutions to be uploaded into the patient’s health record.)
Then there is hesitation on the part of providers. Doctors are worried that patients might take offence to clinical notes that are meant to share information about a patient’s clinical state from one provider to another. This concern is especially at the forefront for notes regarding patients with mental health issues and addiction, says Anne Trafford, chief information officer at St. Michael’s Hospital. Chiasson says, “Sometimes the wording of doctors can be blunt,” but he still thinks that patients should be able to access clinical notes, even though MyHealthNS doesn’t share family doctors’ notes to the patient health record. “Specialists and family doctors are going to have to be more mindful of how we write things,” he says.
Finally, surveys reveal provider concern that patients will misunderstand their lab reports, leading to confusion and anxiety. So far, studies haven’t shown this to be the case. One study by Kaiser Permanente found that patients were more than three times more likely to feel calm and satisfied rather than confused or worried after seeing test results online, and prior discussions from doctors about what to expect led to improved patient reactions. As Chiasson says, “A lot of doctors are very worried that patients are going to be messaging about every little blood test, and patients don’t do that.” That said, patients who are early users of online health records may be more health literate compared to groups who choose not to register.
Are there concerns with patients accessing online medical records?
One of the biggest questions for institutions adopting patient health records is when critical lab results should be released. Many tests, like pregnancy or cholesterol-level tests, can be released to the patient at the same time they’re sent to the doctor. But other test results shouldn’t be released right away. No one wants a patient to have to absorb a result like a positive HIV test or cancer diagnosis alone, in front of a screen.
At the Mayo clinic, doctors are called about highly serious, abnormal test results. In the next two days, the providers notify the patient about the results over the phone or in person, before they’re uploaded to the patient health record, Harper explains.
Sick Kids is taking a more conservative approach, holding results for five days and longer in some cases, so that doctors have time to walk parents through abnormal results first. Sarah Muttitt, chief information officer for Sick Kids, says that in the future, the hospital would like to be able to provide information alongside lab results that helps parents and children understand what the tests mean.
The other major consideration is who gets access to patient online records. How long should parents be able to access their children’s records? And should adult children be able to access their parents’ records?
At Sick Kids, there’s no clear cut-off age in which children manage their patient health record by themselves. “For patients who are 12 years and older who we feel have the right maturity, they can absolutely have their own account,” says Muttitt. “For kids less than 12 or who do not appear to have that maturity or have learning disabilities, those patients and their parents can both have access.”
At St. Michael’s and St. Joseph’s Hospital in Toronto, which adopted Sunnybrook’s MyChart this year, hospital leadership decided not to put pediatric patient records online. They may do so in the future, once legal consent issues are appropriately considered, says Trafford. “There was concern that the parent wouldn’t necessarily be aware that they need to discuss ongoing access,” she says, adding that clinicians were worried children might hold back information around gender identity or sexual activity if they knew their parents could access their medical information.
What is certain is that electronic access to one’s medial record is “a train that’s left the station,” as Chiasson puts it. We can expect that patient health records will only become more widespread and sophisticated. “There’s a fundamental question of who owns the data, and the truth is, we as providers don’t own the data, it’s the patients that own the data,” says Bhatia.
Correction: This story has been updated to indicate that the Mayo Clinic at which Charles Harper is executive dean of practice is in Rochester, Minnesota, not Rochester, New York.