Published January 27, 2017
The Jacobs Multiple Sclerosis Center for Treatment and Research — a clinical partner of the Department of Neurology — is nearing the end of a yearlong collaboration with a research group that’s creating an application to improve patient care and the efficiency of clinical care systems.
The multinational S3 Group, working on behalf of a global biotechnology company, has spent the past year visiting the Jacobs Multiple Sclerosis Center for Treatment and Research to study best practices for multiple sclerosis (MS) care and to test the developing application in the center.
“The group was interested in working with us because we are a large, well-known MS center with comprehensive programs; we provide patients with much more than just medication and diagnosis,” says Bianca Weinstock-Guttman, MD, a professor of neurology who directs the center, which is part of UBMD Neurology.
“We are one of only five MS centers in the United States to be chosen to work with these researchers,” she notes.
Researchers from the S3 Group, based out of Ireland, have been developing a holistic disease-treatment application that aims to improve patient monitoring, identify patient-reported outcomes and personalize patient assessment.
The app has been designed for use on patients’ smartphones and mobile devices. The information patients input is automatically transferred to clinics’ computer systems.
“This application will allow patients to complete questionnaires about conditions — like fatigue and depression — that MS patients have. Patients can complete the questionnaires before seeing the physician. The application delivers this important information to the patients’ electronic health record, so the clinicians can be prepared to provide patients with the most thorough care possible and immediately address any critical issues,” explains Weinstock-Guttman.
“The application will let physicians personalize patient assessment,” she says. “For instance, a patient might be newly diagnosed with MS or might be someone for whom we have to modify therapy. Algorithms process this kind of information, helping us classify patients to better assess their needs.”
The researchers hope the app can eventually be used to facilitate telemedicine, and they are considering the idea of using a third party to manage the data it collects.
To develop the app, the S3 Group researchers visited the Jacobs Multiple Sclerosis Center for Treatment and Research in three phases over the course of 2016. The group is expected to visit the center at least once more in 2017.
The group studied how the center collaborates with other health care specialists and manages patients during the first phase. “They saw everything we do, starting with diagnosis, then follow-up, then determining whether patients are stable. They saw the many types of patients we work with, and they studied the way we work with them,” explains Weinstock-Guttman.
During the second phase, the researchers gave the center a mock-up of the app and asked patients, physicians, nurses and physical therapists to test it.
The researchers have dedicated the last phase to working with their sponsors to finalize the applications’s design. Once it’s complete, Weinstock-Guttman — along with her colleagues — will pilot the application in the clinical setting as a full research project with oversight by an institutional review board.
Weinstock-Guttman says that if the app is used at the Jacobs Multiple Sclerosis Center for Treatment and Research, it has the potential to be an advantageous tool for the trainees who undertake rotations there.
“Usually key information is included in patients’ electronic health records, which our trainees are not allowed to access. The app will allow trainees to see some of this patient health information, and they can use it to improve their understanding of MS and better recognize patients’ needs, enhancing their training,” she explains.
“UB has fellowship training programs in multiple sclerosis and neuroimaging. Also, neurology residents rotate with us, and medical students come here often,” she says, adding that over the last several years, a number of UB medical students have received $5,000 grants for MS research from the Consortium of Multiple Sclerosis Centers.
Weinstock-Guttman notes that UB is an ideal place to pursue MS research because of a data registry established in 1996 by Lawrence D. Jacobs, MD, a former chair of the Department of Neurology who pioneered MS treatments.
“The invaluable registry he created includes data from 13 MS centers. We have around 10,000 patients we monitor on a yearly basis, and we will monitor each patient for up to 20 years. The data comes from a clinical standpoint and also, importantly, from patient-reported outcomes,” she notes.
“Our registry is a goldmine for data analysis and is a wonderful resource for medical students to learn about MS. UB medical students and trainees are fortunate to conduct research using it.”