Patient Data Access News

Arguing for Patient Data Access Amidst Provider Pushback

Health system leaders must use hard evidence and persistence to foster clinician buy-in for better patient data access.


Source: Thinkstock

By Sara Heath

When OpenNotes came onto the healthcare scene in 2011, it introduced the fairly innovative concept of allowing patients to have full access to their clinicians’ notes. Physicians questioned whether this was the right or responsible approach to interacting with patients, and in some cases, cultural barriers within individual organizations kept providers from widely adopting this strategy.

UCHealth faced many of these challenges when it launched a similar open access pilot program way back in 2001, said CT Lin, MD, FACP, Chief Medical Information Officer at the health system.

Providers participating in the System Providing Patients Access to Records Online (SPPARO) project  demonstrated pushback against the philosophy that patients should collaborate with physicians through open notes, with some only participating in the study to prove Lin and his team wrong.

“We had seven doctors in this cardiology practice, four of whom said ‘I don’t know if this is a good idea,’” Lin recalled. “’Progress notes are for doctors. Terminology is hard to understand. Do you not think we’re working hard enough already? Do you want patients to call us with terminology questions? Will they be offended when we call them obese? Or if we say they’re smoking or they smelled like smoke? This is going to be terrible,’ they said.”

In the end, those providers and other study participants changed their minds and recognized the value of patient data transparency. Allowing patient access to clinician notes was indeed a positive step in improving engagement. Providers recalled using their notes to address test results in a timely manner. Patients used the notes to conduct their own health research, coming to appointments prepared with specific questions about how to improve their health.

“Patients had read both the doctor’s note, and the before and after results, and they’re doing their own thinking and research online and they’re calling with very sophisticated questions,” Lin said.

Giving patients ownership of their physician notes also added an element of empowerment, Lin explained. Patients not only had the tools necessary to learn more about their health, but were also able to communicate information to other members of their care team.

CT Lin, MD Source: UCHealth

“Having patients feel like they own their record and like they can give it to their next provider of care who knows nothing about them can be very empowering,” Lin said.

But if this 2001 pilot was so successful, why did it take Lin until 2014 to convince his colleagues to adopt OpenNotes? According to Lin, it was because of inopportune timing and cultural resistance both industry-wide and within his health system.

“Back in 2001, we had this only running in our cardiology practice. For various socio-political reasons, it was very difficult for me to get this adopted throughout our entire health system,” Lin said.

Most of the system’s providers were no different than the pilot doctors had been, questioning whether it was truly responsible to allow patients to see physician notes. What if the patient was confused or offended by something the doctor wrote? What if it created more work for them, between mitigating patient concerns and addressing test results in a timely manner?

On top of these reservations, Lin recognizes that he may have been ahead of his time.

“It is possible that my timing was too early; no one had heard of being transparent in this way,” he said.  “Even sharing test results online was considered a terrible idea.”

But Lin was persistent, incorporating leadership skills into his lobbying efforts. He was relentless in his communication about OpenNotes, and strengthened his relationships with other clinical leaders who had opposing views.

“I met in private with a number of physician leaders, whom I anticipated would object to this,” Lin said. “I did my best to hear them out, address concerns, promise additional support for their clinical area if needed, and promise that we could revisit this decision if indeed patient response was overwhelming or negative.”

Lin was sure to meet with potential naysayers one-on-one prior to large, public meetings about potential OpenNotes adoption. By quelling some of their concerns, he was able to build stronger and more widespread momentum for the project.

To further support his arguments, OpenNotes had proven to be a successful initiative at other clinics and hospitals across the country. In 2011, OpenNotes launched its pilot, yielding a full set of data proving that patients don’t just view their own health data when given access, but they also value that access and use it to improve their health.

Other studies have shown that OpenNotes improves medication adherence and patient safety.

Lin used this evidence to his advantage, offering a tangible argument for why his health system should offer better patient data transparency. This evidence led seven of UCHealth’s primary care clinics to participate in an OpenNotes pilot, and Lin collected data proving its worth. Patient data access didn’t just improve patient engagement in hospitals across the country; it did in his own health system, as well.

“I gathered data, as well as positive stories of patients benefiting, and physicians not noticing any increase in work, and publicized heavily,” Lin noted. This evidence helped build his case strongly enough to convince the rest of the health system to agree upon an OpenNotes go-live date in May 2016.

Now, UCHealth has OpenNotes running across the entire health system, serving 350 primary care, specialty, and surgery practices. Clinicians in the system’s 17 emergency departments and 7 hospitals also share notes via the patient portal.

The work still isn’t done after the go-live, however. To ingrain OpenNotes into UCHealth’s culture, Lin contributed regular columns in the system’s internal newsletters, detailing the successes of the transition and offering guidance for clinicians. And as UCHealth adds more clinics, it makes sure to integrate OpenNotes into their workflows as well, making it a ubiquitous philosophy system-wide.

OpenNotes has also expanded across the country, reaching nearly 10 million patients as of August of last year. But as Lin acknowledges, there is still much work to be done and more patients to be reached.

“That’s still a far cry from the 320 million people we have in the United States, and the vast majority of doctors still are not in favor of or haven’t really addressed the concern of trying to share progress notes with patients,” Lin said.

“It’s an uphill climb, culturally,” he concluded. “Physicians have lots of fears. Today we still get physicians asking if we should hide the notes or if this is a good idea. That conversation is not completely over, even in my own organization.”

However, by uncovering evidence that OpenNotes works and communicating it to doubtful clinicians, Lin is hopeful that more providers will offer patient data transparency. Ultimately, Lin sees these efforts driving OpenNotes to its goal of reaching 50 million patients nationwide.


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