At Geisinger, Experiment in Sharing M.D. Notes with Patients Builds Patient Engagement

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.”

FUTURE IMPLICATIONS

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.”