Although the OpenNotes initiative—designed to give patients access and ability to read visit notes online—has now reached 12 million patients in the U.S. alone, there have been challenges and pushback along the way, dating back to the beginning of the movement.
In fact, says CT Lin, M.D., chief medical information officer (CMIO) at UCHealth, a 7-hospital, 400-clinic system in the Rocky Mountain region, the “original” OpenNotes was actually called “SPPARRO,” or “Systems Providing Patients Access to Records Online.” Although Lin admits he is no fan of that acronym, he says SPARRO was a system that spurred patient engagement progress. The original pilot experience in 2001 at UCHealth specifically included 100 patients in one heart failure practice with its associated seven physicians. “And we had trouble in even getting those seven to sign up,” says Lin.
At the time, Lin says that providing patients access to their notes online was a research interest of himself and one of his colleagues in internal medicine, and was also backed by the CIO of the hospital at the time “who had a real drive to be transparent.” Lin asks, “Why is it that the medical record so opaque to the patient? Something like 0.5 percent of all patients actually request their records, because we make it so hard. You have to pay $25 or maybe [the record] is in some basement of a building downtown, and it takes a month for you to actually get that record. No wonder most patients don’t take that action and go through the activation of requesting their records,” he says. He adds, “It has [historically] been the view of healthcare that notations made by physicians are for themselves or for other doctors. It’s too dangerous for the patients, clearly, to know anything beyond what pill to take. This paternalistic view has existed for a long time.”
As such, it was no surprise that Lin, a clear advocate of OpenNotes, got significant pushback from colleagues and medical leadership in the early going. He says that many people thought it was a terrible idea; one clinical leader said he hoped that Lin’s organization had a malpractice fund large enough to handle all the impending lawsuits; others told him that it would be too much work for nurses to handle all of the incoming messaging and calls, and that they would have to be paid for four extra hours per week. “So we funded this money for the extra staff, but in the end, the extra work turned out to be all of five minutes total for the year. And personally, I rarely got a call about any issues,” Lin says. In fact, he adds, nurses would say that when patients in this program called, rather than asking about the result of a test, since they have read the doctors’ notes already, they began to ask much more intelligent questions about that test and what impact it had.
But still, it wasn’t easy for Lin to convince leadership in the benefits of this initiative. He says that he would go into meetings with randomized controlled data that proved that opening the record caused no issues, but even then, physician executives looked at him as if he “were growing a second head.” Lin says, “I showed them the data, but they countered by saying that cardiology patients are a ‘simple’ sample and that it would never work for others, such as psychiatric patients. I walked out of that leadership meeting with a ‘thanks but no thanks’ response,” Lin says.
But then as more time went by, and the country started to catch onto the benefits, suddenly “OpenNotes” turned into a movement. Indeed, a well-publicized project at Boston’s Beth Israel Deaconess Medical Center (BIDMC), Danville, Penn.-based Geisinger Health System, and Seattle-based Harborview Medical Center, revealed that after the sharing of notes between clinicians and patients, patients reported feeling more in control of their health, being better prepared for their visits, and several other benefits. What’s more, doctors saw little or no impact on their workflows. At the end of that 12-month pilot, 99 percent of patients wanted to continue sharing visit notes and no doctor asked for the notes to be turned off.
Just like that, medical leadership at UCHealth started to become believers, Lin says. “We did seven more pilots in 2014, and in 2016 we pulled the Band-Aid off and set a firm date to go system-wide. We now have 350 clinics, seven hospitals and 21 EDs that all have OpenNotes [implemented] at this point. But it was a long cultural climb; one in which we had to convince medical leadership one-by-one,” says Lin.
With trial data of 30,000 patients under Lin’s belt in 2014, and the culture in the country having changed, Lin told leadership at UCHealth that as part of the electronic health record (EHR) system version upgrade in 2016, everyone enterprise-wide would be part of OpenNotes. “I gave them a choice of going in early or waiting for the system to go live. It had to be one or the other,” he says. “So it was an opt-out model, meaning for all of the 3,000 physicians at our enterprise, as they wrote their notes, the default was that it would be shared with patients. If they wanted to opt out, they would have to push the button to opt-out for each note they wrote. And because of that, our share rate with patients is 99 percent; we have less than a 1 percent of opt-out rate,” Lin says. He adds that the only exception to that is psychiatry, as most of the organization’s psychiatry clinics do not make their notes available to patients, although two of UCHealth’s academic psychiatric practices are now part of OpenNotes.
Still, skeptics who might not be heavily involved in OpenNotes typically give a number of concerns, which include: a greater workload on clinicians who have to deal with more questions from patients now that they are reading their notes actively; possible offense being taken by patients in regards to what doctors write in their notes; and as a result, if clinicians would be as “true” in their documentation as they would be if patients were not reading them.
But Lin says that in the 2014 trials, there were essentially zero complaints and definitely no lawsuits, and this was despite the fact that he would visit with his physicians on a monthly basis to get updates on how it was going. As far as patients taking offense, UCHealth actually put together a one-page whitepaper for clinicians that gave suggestions for how they can write the same note, but in a “nicer” manner. “I have seen examples of physicians writing bad [things] in the medical record about their patients, but you know, patients have had legal access to these records legally since 1970, so hopefully those behaviors are past us.” Lin gave an example that if the patient is obese, for instance, if the clinician links it to why it’s important to lose weight, maybe that patient would be offended, but he says that patients have actually reported back that they want the doctor to be upfront with them in a black-and-white manner. “When it comes down it, anxiety around patients being offended really is not too accurate,” he says.
Going forward, Lin says that he wants to get to a point in which data interchange can be done for patients. “Right now, the record is static. We are showing them PDFs or text documents about what the physicians wrote, but I would love to get to the point where we could take the FHIR (Fast Healthcare Interoperability Resources) standard to allow patients to take their coded medication lists, allergy lists, and problem lists, and be able to share them with another trusted app—maybe a Walgreens app where they could do medication renewals by pressing a button,” he says.
He adds that one of his teams is working on taking the patient portal data, and allowing patients to export that to the state insurance exchange. The idea, says Lin, would be to have patients show payers the claims that they needed this year and from that, they can be presented with options for what is the lowest cost plan that covers all of those claims, of all the plans available. “But if we are still debating if it’s ok to share, and if we’re still debating privacy, we won’t get past where we are now and we won’t be able to innovate on top of it. That’s where I want to get to,” Lin says.