California Initiative to Advance Precision Medicine Precision Medicine for Multiple Sclerosis: Making It Work
This project developed an interactive digital tool to guide treatment decisions for multiple sclerosis patients that aligned with their experience, preferences, and priorities. Led by J.B. Jones, PhD, MB at Sutter Health.
Background
Multiple Sclerosis
A chronic nervous system disease, multiple sclerosis (MS) t affects the brain and spinal cord when the body’s immune system mistakenly attacks healthy cells, causing neurodegeneration. Since MS is usually first noticed between the ages of 20 and 40, patients face decades of physical disability. Rather than a gradual worsening of symptoms, patients experience relapsing episodes of disability in between periods of relative health. As the disease progresses, windows of health diminish in frequency and duration, leaving the patient in a state of permanent disability.
The disease affects people very differently, presenting challenges to health care providers in designing and adapting treatment strategies. MS is at least three times more common in women than men, and has historically been more often associated with Caucasians of northern European ancestry. Recent evidence from several studies, however, suggests that the incidence of MS may be higher in African Americans than Caucasians, possibly due to increasing awareness of MS and more accurate diagnoses. At Sutter Health in 2016, 7% of patients seeking MS care were African American and 7% were Latinx.
Project
Acknowledging the great variability across patients with MS diagnoses, the research team set out to develop an interactive digital tool that would instantly combine the latest information relevant to a specific patient and use it to guide clinical decision-making that aligns with that patient's experience, preferences, and priorities. This project builds on previous efforts that gathered data from large groups of MS patients to improve neurologists' ability to predict how MS may develop over time for a specific patient.
This work adds the ability to incorporate real-time data from the patient's electronic health record (EHR) as well as patient-reported information about symptoms experienced between medical appointments. Monitoring symptoms consistently can lead to earlier and more effective treatment.
The platform developed through this project, neuroSHARE, is an interactive, digital health solution that supports access to relevant clinical and patient-reported data, predicts the future course of disease using data analytics, provides guidance for disease management aimed at slowing progression and addressing associated symptoms, and supports shared decision making between the patient and physician. The research team employed well-established protocols to progressively refine neuroSHARE features to facilitate user-friendliness, usefulness, and user competence.
The web-based platform launches from within the EHR and addresses the challenges of delivering precision care by 1) simplifying complex information by curating, organizing, visualizing, and emphasizing the most relevant details for easy use at the point-of-care, and 2) supporting a patient's understanding, awareness, and involvement beyond what the current EHR is equipped to do. In addition to incorporating knowledge based on the latest research studies, neuroSHARE interprets data provided directly by patients and ensure that the next medical appointment addresses any concerns and priorities directly.
Finally, the research team developed neuroSHARE in a way that makes it adaptable to a number of other neurological conditions that require ongoing care, including movement disorders, seizure disorders, chronic headache, stroke, and dementia.
Research Team and Collaborators
Research Team
- Sutter Health
- J.B. Jones, PhD, MBA
- Sherry Yan, PhD
- Walter F. Stewart, PhD, MPH
- Christa A. Bruce, MPH
- Jacqueline Liu, BS
- Chelsea Lunders, MA
- Diamonne Mitchell, MPH
- Satish Mudiganti, MS
- Ivelina D. Popova, ITIL, ITSM
- Eilleen Sabino-Laughlin, MPH
- Zijun Shen, MS
- Talaya Sin, MA
- University of California, San Francisco
- Riley Bove, MD
- Stephen Hauser, MD
- Erica Schleimer
- Tanya Krishnakumar
Collaborators
- Roche/Genentech
- Laura Julian, PhD
- Jaclyn Wise
- Sutter's Jordan Research and Education Institute
- Joanna Cooper, MD
- Lynn Jehle, NP
- Palo Alto Medical Foundation
- Joe Lacy, MD
- Lee Greenwald, MD
- Plain Language Health
- Jennifer Pearce, MPA
- National Multiple Sclerosis Society
- Janelle Del Carlo
- Sutter Philanthropy
- Sutter Health & UCSF patient advisors