Health IT executives are eagerly awaiting new federal rules designed to make it easier for patients to access their health data. But besides looking at mobile apps and APIs, the team behind the OpenNotes effort to share clinical notes with patients recommends that health systems and their EHR vendors also fine-tune their patient portals to get more out of them.
During a recent webinar, John Santa, M.D., M.P.H., OpenNotes’ director of dissemination, said that when he hears about efforts to make data sharing easier through apps, he thinks: what about portals? “Some activism should be channeled to make existing option for patients much better,” he said.
That is something Emory Healthcare in Atlanta has done. During the webinar, its informatics executives described their efforts to deploy a portal scorecard to identify and patch weaknesses.
Emory is a large health system with 11 hospitals and a large outpatient footprint. Julie Hollberg, M.D., Emory’s chief medical information officer, said the organization is “passionate about improving our patient portal.”
The Emory portal has 474,912 total enrolled patients. It has two full-time call center agents to handle technical questions about the portal, a full-time project manager who manages portal projects, and a manager who dedicates 20 percent of her time to the portal. “We are data-driven and focus on measurement,” Hollberg said.
Elizabeth Sprouse, M.P.H., former director of clinical informatics at Emory and founder of Double Lantern Informatics, did the work to develop a scorecard. “The purpose was to develop ways to evaluate portals based on their likelihood of use,” she said. “Are patients going to be able to sign up and use it.” As organizations look at their roadmap for their portal, the goal is to help them move the dial on engaging patients electronically.
Surveys and research reports find that patients most highly value personalized content that helps with disease management, including secure messaging and lab results. Patients also express strong interest in simple design and ease of registration and log-in, with tech support readily available.
The scorecard asks health systems to note whether their portal has certain features or not. Under Results, for instance, are these elements:
• Lab results
• Notes and visit details
• Prescription renewals and refills
• Medication summary
• View appointments
• Appointment reminders
• Scheduling
Shannon Caul, Emory’s manager of clinical informatics, described how their team used the scorecard. They ran their portal through it first in 2017 and then again in 2020. The health system actually has three portals: Blue is the central one, Gold is used for patients of non-faculty clinicians, and Purple for the Emory Eye Center. “In our original scores from 2017, we didn’t score well in results, lab and radiology results. We did have visit summaries but not clinical notes,” she said. In terms of design, they had some large fonts but they were not used in all cases.
“We broke out the elements in terms of what was under the control of Cerner, our vendor, and what was under our control,” Caul said. Emory works with Cerner each fall to understand improvements on the health IT company’s roadmap. They then worked on elements under Emory’s control, piloting OpenNotes, adding pathology results, a health dictionary, and moving toward narrowing down to one single portal. “We also did more patient awareness campaigns and efforts to create sustained provider involvement,” Caul said. They used the timing of the scorecard assessment, at the end of fiscal 2017, as a tool to drive their strategic action plan.
Hollberg says Emory takes a 360-degree view of the portal, thinking about all its users. “One of best predictors for patient engagement is recommendations of providers and clinical staff. If they talk about the benefits of the portal, patients are much more likely to engage.” Fiscal 2020 initiatives include release of pathology results, the OpenNotes pilot and integrated Kyruus online scheduling. Emory’s overall score went from 63 percent of desired features in 2017 to 92 percent once the 2020 improvements are finalized. That includes a much more robust partnership with patients in design and testing.
Following Emory’s presentation, patient advocate Rosie Bartel shared her story and some recommendations from her experience using portals. Ten years ago Bartel developed a MRSA infection following a knee replacement operation. This led to severe complications, including amputations, and dozens of operations and multiple hospitalizations. “I had to look to the portal for help, but many times it was a hindrance rather than help,” she said. Her ongoing health issues have required her to use seven portals. “Of those, I use one all the time. The other six I use to get test results.”
“For me, test results are important, appointments are important, but communication is key,” she said. “At times, I have had doctors disagree about treatment and I was the go-between, and the only time I could handle that well was where there was OpenNotes. Caught between two doctors, you don’t know which way to go, and you are caught in the walkway between their silos. You can’t communicate if you don’t have their notes. OpenNotes was my saving grace, and also my downfall when I didn't have them. I changed hospitals and physicians because I couldn’t get from one silo to another. You have two doctors who won’t communicate and you are caught in middle.”
Her experience has led her to work on panels and as an advisor to EHR vendors. In her recommendations for portal improvement, Bartel said, “You have to be looking at how it will improve patient outcomes. I am a better patient when I have good information.”
