The Sutter Health network is launching a new research project which will blend patient-reported and EHR-based data to improve the precision of multiple sclerosis treatment. Sutter will fund the project with a $1.2 million award from the California Initiative to Advance Precision Medicine.
To conduct the project, Sutter Health researchers are partnering with colleagues at the University of California, San Francisco. Working together, the team is developing a neurology application dubbed MS-SHARE which will be used by patients and doctors during appointments, and by patients between appointments.
During the 18-month demonstration project, the team will build the app with input from the health system’s doctors as well as MS patients. Throughout the process of care, the app will organize both patient-reported data and EHR data, in a manner intended to let doctors and patients view the data together and work together on care planning.
Over the short term, researchers and developers are focusing on outcomes like patient and doctor use of the app and enhancing the patient experience. Its big picture goals, meanwhile, include the ability to improve patient outcomes, such as disease progression and symptom control. Ultimately, the team hopes the results of this project go beyond supporting multiple sclerosis patients to helping to improve care for other neurological diseases such as Parkinson’s Disease, seizure disorders and migraine headaches.
The Sacramento, Calif.-based health network pitches the project as potentially transformative. “MS-SHARE has the potential to change how doctors and patients spend their time during appointments,” the press release asserts. “Instead of ‘data finding and gathering,’ doctors and patients can devote more time to conversation about how the care is working and how it needs to be changed to meet patient needs.”
Time for an editorial aside here. As a patient with a neurological disorder (Parkinson’s), I’m here to say that while this sounds like an excellent start at collaborating with patients, at first glance it may be doomed to limited success at best.
What I mean is as follows. When I meet with the neurologist to discuss progression of my symptoms, he or she typically does little beyond the standard exam. In fact, my sense is that most seem quite satisfied that they know enough about my status to make decisions after doing that exam. In most cases, little or nothing about my functioning outside the office makes it into the chart.
What I’m trying to say here is that based on my experience, it will take more than a handy-dandy app to win neurologists over to collaborating over charts and data with any patient. (Honestly, I think that’s true of many doctors outside this specialty, too.) And I’m not suggesting that this is because they’re arrogant, although they may be in some cases. Rather, I’m suggesting that it’s a workflow issue. Integrating patients in the discussion isn’t just a change of pace, it could be seen as a distraction that could lead to worse care rather than better. It will be interesting to see if that’s how things turn out.