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myUHN gives patients real-time access to health records

By Jerry Zeidenberg

TORONTO – The University Health Network is steadily rolling out its myUHN Patient Portal to all patients at the organization’s four hospitals – Toronto General, Toronto Western, Princess Margaret Cancer Centre and the Toronto Rehab Institute. Unlike many other portals, test results and other information are posted as soon as they are available, giving patients their results in real-time.

“My patients are seeing their results even before I do,” said Dr. Richard Tsang, a radiation oncologist at UHN. But he said that’s a good development, because patients want their results as soon as possible.

As well, it can save them a lot of time and trouble. “We don’t want them coming in just for test results,” he said.

Patients can also check their appointments online, and the system will send them reminders. “We’ve reduced the number of no-shows because of this feature,” said Dr. Tsang.

Dr. Tsang and his colleagues in the radiation oncology clinic were among early adopters of myUHN. The hospital designed its portal in-house over the past several years, testing it at seven different clinics at Toronto General and Princess Margaret.

Now, uptake of the portal is really taking off. Since the rollout at the end of January, patients have been signing up at a rate of 1,000 per week. “And we’ve only scratched the surface,” said Selina Brudnicki, Program Lead with UHN Digital, explaining that the hospital is now making the portal available to all of the hospital’s various clinics and inpatient units. “It’s a gradual rollout, as we encourage staff to offer and talk about the portal as part of the patient visit.”

The strategy has definitely paid off, as there is a 45 percent adoption rate among patients who are offered access to the portal.

They’re not just signing up and forgetting about the portal – UHN has observed 82 percent of them returning to the portal each month.

Usage could reach very high numbers, as UHN sees more than 250,000 out-patients per year.

Laura Williams, Director of Patient Engagement, noted that many users of the system were not regular users of the Internet, but the ability to access their health information through the portal spurred them to get online. “While using online technology is still a barrier for some, it is encouraging to see so many non-traditional users taking part,” she said.

Williams added that patients can also give family members and caregivers access to their health information, as they are often an important part of the care team. Significantly, patients can specify which kinds of information each caregiver can access.

myUHN is one of the first patient portals in Canada offering real-time access to results, reports and clinic notes. Patients will even see pathology reports, physician and mental health notes.

Other hospitals often limit access to sensitive information, or delay posting them in their portals.

Surveys showed that patients wanted full access to this information; they also wanted quick access to their test results, diagnostic imaging reports and pathology reports.

“The majority want to see their results as soon as they are ready, even before talking to the doctor, which led to our decision for real-time access,” said Brudnicki.

“From a patient perspective, this is a big issue, just for my own mental health,” said Carrie Orfus Gelkopf, an oncology patient who is being treated at Princess Margaret. “There is a ton of anxiety from not knowing.”

Using myUHN, she has been able to gain fast access to test results and reports; she has also developed the expertise to interpret some of them on her own.

Many organizations have trouble with this idea, and feel that patients won’t be able to properly understand test results or records. The feeling has been, at least in the past, that patients don’t have the knowledge or skills to properly absorb the information, or will react poorly to negative test results when left on their own.

For its part, UHN debated this issue internally and decided that patients should be enabled to access their information in real-time. With guidance and support, all patients should be included as full participants in their care.

“We did have some anxiety about this originally,” said Dr. Tsang. “But we learned that we could pre-empt any problems by teaching the patients how X-rays and other results are properly interpreted.”

Patients can also be coached about the meaning of results before receiving them – if a test is scheduled, the physician can instruct the patient about the possible outcomes, so that he or she is prepared.

Having full access to charts and reports also enables patients to better understand their illnesses. Too often, in the doctor’s office, they are flooded with information of which they retain only a portion. When they go home, they can go online, see their records and results in myUHN, and gain a fuller understanding of all of the details.

“When I see my doctor, he may tell me eight different things, and I can only remember two of them afterwards,” said Gelkopf. “The portal lets me go back later and see it all again.”

Armed with all of the information, patients can better discuss their conditions with family and their own caregivers.

“The patient is an expert, and a key partner, in their own care,” commented Dr. David Jaffray, Executive VP of Technology and Innovation at UHN. “We need to support this reality.”

“We believe the healthcare system is moving toward democratization,” added Dr. Peter Pisters, President and CEO of UHN. He noted that many patients are already actively researching their illnesses on the web and are also members of online forums.

“Many of them already have access to sophisticated sources of knowledge,” he said.

So, at UHN, the decision has been made to move away from a provider-centric model towards consumer-driven healthcare. “Patients used to be given information on a ‘need to know’ basis,” said Dr. Pisters. “That model is dead. We want to empower our patients.”

Instead, at UHN, patients are being given full access to their information as soon as it is available.

Dr. Pisters said that every organization that’s done this has improved its medical outcomes. They have also enhanced the satisfaction of patients and reduced their anxiety. As well, he said, the clinicians who are involved have been pleasantly surprised by how well it works.

As an example of how care is improved by sharing records with patients, Dr. Pisters noted that patients will often correct mistakes they see in their charts. “If there are mistakes made about allergies, or other issues, and the patient calls us to correct them, that benefits everybody,” he said.

“Patients want to be empowered with access to their own health information to understand and partner in their health,” added Joy Richards, Vice President, Patient Experience and Chief Health Professions. “And they want greater control in deciding when and how they access information.”

The University Health Network built myUHN with its own team of information technology professionals, working in conjunction with clinicians, administrators and a patient committee.

There are other portals available for use by hospitals, but UHN wanted to keep the development in-house. “We want to be in control of our digital doorstep,” said Dr. Jaffray. “The portal is really a critical component of the digital patient experience – a major part of how we will support our patients and their families going forward.”

He said that UHN is innovating in many areas, and will be bringing these innovations to its portal as they validate their functionality and benefit.

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