By Rajiv Leventhal
As Stage 2 of meaningful use continues to raise the bar in terms of how and when hospitals and physician groups must make patient data available, patient care organizations have been continuing to develop innovative methods to increase patient engagement.
OpenNotes is an initiative that falls under this movement, as it is a program that invites patients to review their visit notes written by their doctors, nurses, or other clinicians. Funded through a $1.4 million grant from the Robert Wood Johnson Foundation in 2011, the 12-month OpenNotes project brought together 105 primary care doctors and more than 19,000 of their patients to evaluate the impact on both patients and physicians of sharing doctors’ notes after each patient encounter. Led by Tom Delbanco, M.D., and Jan Walker, R.N. of Boston’s Beth Israel Deaconess Medical Center (BIDMC), the study included 24 primary care physicians and 8,700 patients at Danville, Penn.-based Geisinger Health System (GHS), and additional patients and physicians from BIDMC and Seattle-based Harborview Medical Center.
These notes are different from regular visit summaries, which give patients more limited snapshots of their visits. Conversely, a note contains a detailed account of the visit, including the history, exam, relevant lab or study findings, and the clinician’s assessment and plan of care. “As doctors, we know that patients generally retain only a portion of the information that is exchanged with their doctor during an office visit,” says Jonathan Darer, M.D., chief innovation officer for the division of clinical innovation at Geisinger. “One of our hopes with OpenNotes was that facilitating access to doctors’ notes would engage patients and potentially help them remember more of what was discussed during the visit.”
The study showed that patients who read their notes felt more engaged. Close to 11,200 patients—approximately 82 percent—opened at least one note contained in their electronic medical record (EMR). Of 5,391 patients who opened at least one note, 77 to 87 percent across the three sites reported that OpenNotes made them feel more in control of their care and helped them adhere to their medication regimens.
Due to the project’s success, Geisinger will now grant more than 100,000 of its patients access to their doctors’ notes for the first time through the secure MyGeisinger online patient portal when the health system expands OpenNotes in May. This expansion will include more than 500 Geisinger physicians, encompassing all of primary care and general pediatrics, and selected physicians within pediatric subspecialties, dermatology, endocrinology, pulmonology, nephrology, rheumatology, cardiology, cardiothoracic surgery, vascular surgery, neurosurgery, and women’s health—including obstetrics and gynecology and gynecologic oncology.
According to Darer, GHS has a long history of transparency with its patients through its MyGeisinger Portal (220,000 patients currently use it on a regular basis). “They can use it to message their healthcare team, look at medication risks, enter information for conditions such as hypertension and blood sugar, and can schedule appointments. They have never had access to physician progress notes, though, and now, the three groups are working together to scale this across the country,” Darer says.
Although the overwhelming majority of patients in the OpenNotes trial were keen on having access to their physicians’ notes, the initiative did reveal some apprehension in both patients and providers. According to Darer, there were a few core concerns, most notably doctors being less candid with their notes, and patients getting unnecessary anxiety from the content of the notes.
Those two concerns are related, and Darer admits that if doctors would be less candid, their documentation would be of less value. The fear was, “If doctors know their patients are reading the notes, will they write as candidly as they might otherwise?” And there were a few cases of doctors reporting that, says Darer, though that number was less than 20 percent. When it did happen, it was in the areas of health where you might expect some hesitance in, such as obesity, mental health, substance abuse, and cancer.
Darer says all physicians were told, though, to create documentation for themselves and others that helped deliver the best possible care. The trial did not go over certain areas that were thought to be a little too controversial such as psychiatry or interventional pain. Additionally, all patients between ages 12-17 were excluded for this go-live. And any doctor who works at a department that does anything with child abuse was also excluded, says Darer, adding that while they wanted to get mostly everyone live, they weren’t keen on tackling controversial areas until we have landed the bulk of the group. “At the end of the day, there were some doctors who may have been reluctant but still were bold enough to participate. Many of them came up to me after and told me how great of an initiative it was. They would say, ‘I was really worried but now I think this is better for my patients.’”
Darer also stresses that there was no added physical burden on the physicians. Evidence is overwhelming that that’s a false statement, he says. “The patients weren’t going to their doctors with more work and they didn’t torture them by needing clarifications. Not one doctor at GHS reported spending more time in out-of-office communications answering questions from the patients or their families. This will not add a burden, but instead it will create greater transparency in the long run to help them with their care delivery.”
The concern of patients not being able to handle the notes was addressed by the trial leaders giving the physicians the right to exclude patients—something that did happen, but not often, Darer says. “We allowed providers to exclude patients on a go-forward basis. Out of [all] the original patients, about 170 were excluded. And in the go-live, which encompasses more than 100,000 patients, doctors excluded 300 to 400 patients. There are certain patients that doctors think cannot handle this information responsibly and sometimes it can cause more harm than good. There is rationale to that, and we understand it,” Darer says.
Darer admits there were also a small number of patients who reported they found the notes more confusing than helpful, and it made them worry more. It may have been appropriate for some to worry more, but there were scenarios were patients would get more anxiety than necessary, and those are the ones whom physicians might exclude, Darer says. “No [part of] healthcare is without risk, and this is no different. There is potential for harm so we give providers the ability to exclude. But at the end of the day, it’s a small percentage of patients, and those people should not get in the way of those who find great value in it.”
As far as security, Darer emphasizes that the security in portals is very effective. “Everyone has a password, so it’s not like the data is flying around everywhere. You sign on using your own secure portal.” The trial leaders did, however, ask patients if sharing notes makes them nervous, and about 1/3 did report concerns about the security of their information. Despite that, says Darer, 99 percent of patients in the trial all reported they wanted it to continue. “Ultimately, it’s up to them, though. They don’t have to participate—they can easily exclude themselves. The notes don’t have to be made available, but it’s clear that even with security concerns, they want access to this information.”
Healthcare is inevitably going down a road towards transparency and more patient engagement, and Darer says while he knew that transparency was already good, he knows it even more now. “Physician documentation has not been as valuable as you would hope. Unfortunately, a lot of the documentation process has been driven by medical and billing challenges, and regulatory needs. I think getting patients and their families access to clinical information will evolve the documentation process into something far more valuable where the progress notes drive better care and serve as more than documentation for billing purposes.”
Darer says that the sharing of these notes will also become very important—not just for patients but additionally for the folks who take care of them. Informal caregivers are out there suffering, and many are dealing with very challenging and depressing home situations, having to take care of aging parents or sick kids. According to www.caregiver.org, 65.7 million informal caregivers make up 29 percent of the U.S. adult population, and those caregivers who live at home with their care recipients spend nearly 40 hours per week providing care.
“It’s been hard for [caregivers] to get information that they needed to do their job effectively,” says Darer. OpenNotes can give them a great opportunity to get insight in areas where they were limited before. Having access to these notes may enable them to be far more effective in their roles, and that is something we will continue to study.”
Darer accentuates that the basic message of the trial is that patients like seeing the notes WAY more than physicians think they do. Patients are engaged with the information, they value access to it, and even if they don’t completely understand it, they want it, and want to figure out ways to understand it. We need to continue to be bold and trust patients and their families. When asked if Darer was surprised in the trial’s results, he says, “I’m not surprised it worked, but I am surprised it worked as well as it did.”