- It is difficult to discuss patient portals and patient data access without mentioning OpenNotes.
OpenNotes was created in 2010 to allow patients to view their clinician notes using health technologies such as patient portals. Since then, OpenNotes has received extensive funding from large healthcare stakeholders and has expanded to reach millions of patients across the country.
OpenNotes’ popularity is not unfounded. Numerous studies have indicated that patients benefit from viewing their provider notes. While there are still some concerns about the effects notes have on the patient-provider relationship, it is clear that OpenNotes is here to stay in healthcare.
It is important that providers understand the OpenNotes program on the whole so they can reconcile the changes OpenNotes can make to their workflows and patient care.
OpenNotes is not just a technology
To be clear, OpenNotes is a philosophy, and not a specific technology vendor.
“OpenNotes is a national, nonprofit movement advocating for a culture change in the way visit notes are managed,” the group says on its website. “We’re committed to spreading the availability of open visit notes and studying the effects.”
OpenNotes is the idea that a healthcare system will make openly available clinician notes so that patients can see specifically what health issues are observed. According to OpenNotes, this will help empower patients and families, better inform patient caregivers, and improve the quality and safety of patient care.
This notion first emerged in the healthcare space in 1973, following the publication of a New England Journal of Medicine article, according to the OpenNotes timeline. The article advocated for patient access to their own health data.
As time wore on and the healthcare industry embraced various tools that enabled patient data access, attempts at sharing clinician notes emerged. In 2010, the Robert Wood Johnson Foundation (RWJF) funded a project called OpenNotes.
OpenNotes published its first pilot results in a 2012 Annals of Internal Medicine article. The pilot introduced OpenNotes to primary care centers at Beth Israel Deaconess Medical Center, Geisinger Health System, and Harborview Medical Center for a three-year period.
During that time, over 13,000 patients had viewed a clinician note. Eighty percent of those patients reported feeling more in control of their own care, and 70 percent said they were more likely to remain adherent to their medications, thanks to the clinician notes. A negligible percentage of patients said they felt confused or overwhelmed by clinician note access.
Researchers recognized the promise OpenNotes had in improving both clinical quality and the patient experience. The pilot results thus prompted RWJF and other benefactors to continue funding the project.
OpenNotes has received provider pushback
Although early pilots suggested OpenNotes efficacy and success, it continued to be a long road before widespread adoption. As noted above, the idea for patient data access first emerged in 1973, but did not come to tangible fruition until 2010. That is likely due to expansive provider pushback.
UCHealth Chief Medical Information Officer CT Lin, MD, FACP, faced that kind of pushback when he tried to launch his own version of OpenNotes in his health system. After introducing a system called System Providing Patients Access to Records Online (SPARRO), Lin saw first-hand the apprehensions clinicians had with offering patient data access.
“We had seven doctors in this cardiology practice, four of whom said ‘I don’t know if this is a good idea,’” Lin recalled in an interview with PatientEngagementHIT.com.
“’Progress notes are for doctors,’” Lin continued. “’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.”
Ultimately, the SPARRO pilot clinicians changed their minds after seeing the benefits patients and doctors felt when patients could consult clinician notes. Patients arrived at visits with better, more informed questions. Patients were also more adherent to treatment and follow-up plans, the SPARRO pilot found.
However, even after that success, clinician apprehensions prevailed and Lin did not see widespread SPARRO adoption. It wasn’t until 2014 that Lin managed to implement OpenNotes across UCHealth.
“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.”
Lin lobbied hard across his health system for providers to adopt OpenNotes. He continually met with providers with contrasting opinions and presented convincing evidence. He held seminars to highlight the efficacy of clinician note sharing and pointed toward research that confirmed OpenNotes success.
Ultimately, Lin prevailed in OpenNotes adoption in 2014.
However, Lin – and providers like him – are still facing providers who wish to see improvements in OpenNotes. In a 2016 article in the Journal of the American Medical Association, researchers reported provider opinions of the philosophy.
Some clinicians are still apprehensive about patients viewing unfiltered physician notes, for example. To work around this, some doctors have been using more sensitive language in their notes. Other providers are concerned about patients viewing lab results prior to a doctor explaining result consequences.
Some providers set their tools to share lab results three days following completion. In other practices, doctors warn patients beforehand what lab results could mean and caution patients that they may see their results before a provider can.
Taking these measures beforehand have mitigated some panic that can arise when patients don’t understand their results.
Ultimately, these current critiques indicate that no system or philosophy is perfect. The healthcare industry is still on the road to figuring out the best methods for sharing clinician notes, and involving patients in care on the whole.
Where OpenNotes is headed in the future
Since its emergence in 2010, OpenNotes has reached approximately 14 million patients across the country, per the OpenNotes website. Alongside UCHealth and the OpenNotes pilot sites, systems such as the VA, Mount Sinai Health System, and many others have adopted OpenNotes.
In 2015, OpenNotes announced that it had received more funding from RWJF, as well as from Cambria Health Foundation, Gordon and Betty Moore Foundation, and the Peterson Center on Healthcare. The funding amount of $10 million aims to spread OpenNotes to 50 million patients nationwide.
OpenNotes has also been the focal point of extensive patient engagement research. At the end of 2016, researchers found that patients with OpenNotes access and annotation capabilities can become partners in patient safety.
Patients can detect medical record errors – usually pertaining to medication – and submit corrections. In the study, 57 percent of safety reports ended in a medical note change.
Lin said there is still a long road ahead, despite the tens of millions of patients with clinician note access.
“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.”