Develop a dashboard that doctors could share with patients who have rheumatoid arthritis to help them see how their disease is progressing over time, and how medicine and other therapies may help alleviate pain and joint swelling.
Partners
Gabriela Schmajuk, MD, a UCSF assistant professor of medicine and chief of rheumatology at the San Francisco VA Health Care System.
Background
One of the biggest challenges in treating patients with rheumatoid arthritis has been to measure the severity of the pain people are feeling, and to gauge whether it’s improving or worsening over time. “Patients have pain and swelling in the joints, but there's not a number that tells you how someone is doing,” Schmajuk says. “For someone with high blood pressure, you know their blood pressure and you can measure it and treat it. For someone with diabetes, you know their blood sugar and you can follow that number over time.”
“For rheumatoid arthritis, that didn't exist for a really long time,” Schmajuk says.
About 25 years ago, rheumatologists began developing a system in which patients would assign a number to the pain and swelling in their joints. As doctors looked at the number over time, they could decide to increase or decrease medication to get patients through the worst episodes.
“One missing puzzle piece has been communicating about that number with the patient,” Schmajuk says. “Many patients would appreciate an understanding of what this number was about. It would help them understand their medication, motivate them to take their medication, and get them to try to drive their number down, which would mean less joint swelling and pain.”
When Schmajuk learned about SOM Tech, she saw a possible way to fill in that missing puzzle piece.
Approach
The first challenge for SOM Tech was to work within Epic, the system that contains patients’ records. As with any software system, Epic is designed for certain uses, and it can require creativity to bend it to new uses.
For the arthritis project, Schmajuk wanted to include what she called “patient-reported outcomes” in Epic. That’s not the objective data that the system normally includes—all the numbers like height, weight and blood pressure that Schmajuk referred to.
“By patient-reported outcomes, we basically mean those things that you'd get by asking questions of a patient,” says Tom Manley, the SOM Tech project manager who worked with Schmajuk. Doctors wanted to include more subjective questions, such as: “How's your pain level been? Have things been better or worse since your last visit? Do you think that this new medication is helping? Is it better than the last one we tried?”
“Unfortunately, Epic makes it hard for patient-reported outcomes to be included in a patient's medical record,” Manley says. Even the doctor’s notes, which go into the record, are hard to search, organize, and distill for quick insights. “It's really hard to pull notes out from the last three years of somebody’s patient history. So much of that information is in text instead of in measures, so we can't chart it.”
Solution
Manley and his team started with Salesforce software, which is easy to use and to integrate with Epic. They built what he calls “a little dashboard in a Salesforce application that gets exposed to Epic as a module.” They called it the PRO Dashboard, which stands for Patient Reported Outcomes.
The way it works is, physicians who’ve been approved to use the system can log in to Epic, and the PRO Dashboard shows up as a link in a sidebar. The doctor clicks on the link and opens the app.
Because it all happens within Epic, the team behind the PRO Dashboard knows its system is secure. “They’ve got to be authenticated for the link to even show up,” Manley says.
Once in the app, the patient’s information loads automatically, along with the key questions the doctor needs to ask, about the patient’s pain, the progress, and the medications. “We get some numerical data over time as patients keep coming back and filling this out,” Manley says. “And we can show charts that indicate that the patient's pain is up or down. The system makes bar graphs based on their answers.”
The graphs get overlaid with information pulled from the record of the patient’s prescriptions: What medicine are they taking? When did they start? When did they stop? Are they taking it by injection or orally? “The physician can see a graphic representation of the patient's history and what medicines they've tried, and whether the pain is better or worse,” Manley says.
“All of this data would be available to a physician if they dug through the medical record system on their own, but now they are able to coalesce it into something that is understandable,” Manley says. “Instead of having to look up and remember all this stuff, we can just say, ‘Look at this chart,’ and it's simple enough that they're able to pull it up while the patient is in the appointment.”
“All we're trying to do is transform the data into a conversation between a patient and their doctor,” Manley says.
PRO Dashboard in the EHR
As often happens, SOM Tech and the rheumatologists then began testing it, showing it to people, making changes, and coming back with new iterations. In the middle of the process, Covid hit, causing a delay, but ultimately the system got on track.
Now the picture is complete, Schmajuk says. “A doctor is at a UCSF clinic, and a beautiful graph pops up on the screen. The doctor can share it with the patient. It’s built for intuitive understanding. You don’t need a lot of training. It’s geared toward low health literacy. It’s got a lot of icons.”
“We asked patients: ‘What do you want to see during your visit? How can we help you understand these disease activity scores?” Schmajuk says. “We want you to understand your disease, why you should take your medicine, and what the goals are of your treatment.”
“To be honest, it’s worked out better than I even imagined,” she says. “We’re getting a lot of positive feedback from patients and from the rheumatologists at UCSF.”
For Schmajuk, working with SOM Tech was a dream come true. She wanted to develop a technological solution, but had no idea how to do it. “I had never designed an app,” she says. “We’re doctors. This isn’t what we do. They really led us through the process in a really effective way.”
“One lesson I learned is that these applications require lots and lots of iterations,” she says. Given the other software systems, and the sensitivity of health records, there always seemed to be another adjustment to make. That never fazed the SOM Tech team. “They’ve been cool, calm and collected, and so easy to work with,” Schmajuk says. “I appreciate all the members of the team—the designers, the creatives, the technical folks.”
“They’ve been super,” she says. “They’re extremely responsive to everything we ask them to do. The whole team understood the vision very well from the beginning and helped us articulate to them what we needed.”
Except for the unavoidable speed bump the project hit when COVID knocked everything off course, Schmajuk says, “the process was really smooth and rewarding for us.”
Written by Dan Fost for SOM Tech (2022)
Working groups were held with both patients and providers to design PRO dashboard
Exercise from a Pro Dashboard working group with patients
