“We are trying to use digital technologies to make the collection, capture and use of PROMs as seamless as possible for rheumatologists,” states Dr. Yazdany. “For example, we are using AI to extract PROMs from clinical notes because entering this information in structured data fields is very time consuming. We are using AI to predict PROM trajectories for individual patients and to simulate these trajectories with different treatment choices.”
The hope is that “one day these tools will help with shared decision making regarding treatment plans, including recommendations for therapy changes and other interventions, such as exercise or physical therapy that might improve outcomes,” says Dr. Yazdany.
Clinical Integration
Most rheumatologists in the U.S. collect PROMs, notes Dr. Yazdany. Therefore, we are “ahead of most other specialties in this area.” The next decade will hopefully allow us to use PROMs “as the basis for digital tools that improve outcomes for people with rheumatic diseases.”
Still, Dr. Bartels notes, “Few groups routinely collect PROs beyond pain scores or RA RAPID3 [Routine Assessment of Patient Index Data 3] scores for instance, and those that do collect PROs more widely (e.g., PROMIS scales) often struggle to integrate and act on data.”
“Based on what we are learning, we are changing approaches,” Dr. Bartels says. “First, we are looking for crosscutting measures, like functional assessment, that are relevant across conditions to a) focus on function as a key outcome and b) to reduce the reporting burden for clinics and patients.
“Second, for a recent Centers for Disease Control and Prevention-funded ACR lupus project, we created a resource bundle to support collecting PROs in clinics around depression and acting on them. This included working with patients to pick PROs that mattered, and working with practices on paper or EHR collection strategies.”
Finally, she notes, “We are sharing best practices on what to do with adverse PROs once collected, to truly be patient centered. Some practices updated lists of community counseling services accepting patients to respond to depression screenings, others shared physical therapy or exercise options to respond to poor function.
“It’s exciting to use PROs to get closer to how the World Health Organization describes health: ‘A state of complete physical, mental and social well-being and not merely the absence of disease or infirmity,’”5 concludes Dr. Bartels.
Katie Robinson is a medical writer based in New York.
