Patient access to health records: striving for the Swedish ideal

Clinician concern

The process was long and fraught, necessitating legal changes and research to allay a series of concerns, raised mostly by clinicians.3

The journey began in 1997 in the Uppsala region, a county north of Stockholm, with a project called Sustains 4—an attempt to set up an “internet health account,” much like an online bank account. Sustains was initially hampered by Swedish data protection laws, which did not allow patients to access records.5 It took the introduction of the Patient Data Act in 2008 to let patients in, and Uppsala County Council then issued a trial group of 300 000 patients access to their full electronic health record in 2012.

There was still resistance. “When we launched at the end of 2012, the region’s oncologists wanted to be excluded—almost all physicians thought that full access might upset the patients,” says Benny Eklund, one of the founders of the Uppsala project and a senior adviser at a pain clinic in Ystaad, a town on Sweden’s southern coast. Eklund’s team agreed to investigate what patients with cancer thought about having full access to their records.

“We asked if patients would be afraid of seeing their lab results in real time,” Eklund explains. “They replied, ‘Of course I’m afraid, but not knowing is no alternative.’ Some said they looked at lab results with a friend—they’d rather cry with a friend than in front of their oncologist. They wanted to be prepared for the next meeting. Those patients that were too scared didn’t log in. Patients are smart—they can take the responsibility themselves.”6

Gradually, other counties rolled out the system, although there were setbacks. Press reports included the 2015 case of Birgitte Holmbom, who unexpectedly discovered she had lymphoma while making a routine online check on her diabetes records.7 Clinicians continued to be wary,3 but Uppsala’s—and ultimately all of Sweden’s—doctors agreed to take part.

They worried that patients would only access their records during weekends and evenings, when no one at the surgery or hospital could answer questions or deal with concerns. But an ongoing research project at the Karolinska Institute in Stockholm has found no evidence for this concern—user activity decreases during weekends and there was no spike in phone calls.

“Although the research indicates that patients’ experience mainly benefits, the fears among healthcare professionals remain high,” says the project leader, Maria Hagglund, programme director for the institute’s global masters programme in health informatics. “Hypotheses are many, but one stresses the power balance between patients and healthcare professionals as a reason for clinicians’ reluctance to share.”

Slow international progress

The problem is not confined to Sweden. Clinicians in many countries, including the UK, have opposed efforts to allow patients to see their medical records. At around the same time as the Uppsala project began, a US trial of OpenNotes, a system for sharing doctors’ notes from appointments and visits with patients, met similar resistance.

The 12 month OpenNotes study took place at Beth Israel Deaconess Medical Center, a large teaching hospital in Boston; the Geisinger Health System, which has clinics in rural Pennsylvania; and Harborview Medical Center in Seattle. A total of 105 primary care physicians completed the study, but 143 declined to participate. Nevertheless, some 20 000 patients were given access to their notes—and more than 80% of patients opened at least one note.8

Two thirds of patients reported a better understanding of their health and medical conditions and that they were taking better care of themselves, doing better with taking their medications, and feeling more in control of their care. For clinicians, only 3% spent more time answering patient questions outside visits and 11% spent more time writing or editing notes—with a fifth reporting changes to the way they wrote about cancer, mental health, substance misuse, or obesity.8

After the trial, some 99% of patients and 75% of doctors wanted to continue using OpenNotes, explains Janice Walker, assistant professor of medicine at Harvard Medical School and cofounder of OpenNotes. “We now have about 12 million patients and 50 institutions, but we’ve got a long way to go,” she explains. “We’ve got all the big academic medical centres on board—[they are] well resourced and interested in the new thing. Smaller places with fewer resources is where we get real push back from doctors. If you tell a doctor that everything they write will be open to patients they turn pale. Once they try it, its fine, but its hard to get them to try it.”

The Canadian University Health Network (UHN), which includes Toronto General and Toronto Western Hospitals, Princess Margaret Cancer Centre, and the Toronto Rehabilitation Institute, carried out a similar trial to make laboratory results, diagnostic imaging reports, pathology reports, clinic notes, and mental health notes available in real time. It found the move had no significant effect on patient anxiety but did improve both clinical and service efficiency because there were fewer telephone calls about results and appointment schedules and fewer requests for copies of health records; 96% of patients using the portal said they prefer real time access to their health record, even before seeing their doctor.9

As a result, this year UHN has started expanding the portal across all four hospital sites. “We will measure pre- and post-implementation results again after we complete roll-out,” explains Selina Brudnicki senior project manager at UHN. “Currently, we have over 14 000 patients accessing their portal, and increasing at a rate of 1000 new patient registrations per week as part of roll-out. We expect to offer over 250 000 patients access to their portal within the first year.”

In the UK, all patient and care records will be digital, real time, and interoperable by 2020, according to a 2015 speech by the health secretary Jeremy Hunt.10 And by 2018 all patients should be able to access their general practice records online in full, including allergies, medication, blood test results, appointment records, medical histories, and all health and care interactions.11

Already UK patients should have access to their electronic summary record, but few seem to be doing looking at it.12 The record contains limited patient information—prescriptions, allergies, and adverse reactions—and is shared between hospitals, general practices, walk-in centres, and community pharmacists. However, a study in 2016 found only 0.4% of patients had accessed their record.13

Although the technological challenges have been overcome, opposition from clinicians remains a barrier to successful implementation of full patient access.

“The rate of uptake of the summary care record is down to the doctors,” argues Amir Hannan, the GP who took over Harold Shipman’s practice in Hyde, Greater Manchester, and used digital access as a vital tool in rebuilding patient trust. “There are GPs who show patients how to create accounts and what to do online so the patient comes out with account, password, and knows how the site works. That’s how you change culture.”

In 2013, fewer than 30% of UK doctors believed patient access to electronic health records was a good idea, largely because of concerns about the security of online medical records.14 And a 2015 survey of UK and US doctors found that two thirds (66%) were reluctant to share health data with patients and 17% were completely opposed to the idea.15

“It’s the same story all over the world,” says Mohammad Al-Ubaydli, chief executive of the patient portal Patients Know Best, which allows patients to create and control a single electronic health record hosted by the NHS N3 network and grant access to specific care providers. “Swedish democracy is the kind where, when the government realises something is good it passes a law ensuring everyone does it. American democracy is the opposite. The UK is somewhere in between. Ultimately, the government has said that by 2018 all patients should be able to access their GP records online in full. The question is, will doctors help people access it or hang back through needless worries?”