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A Precision Medicine Tool for Patients With Multiple Sclerosis (the Open MS BioScreen): Human-Centered Design and
Erica Schleimer1, Jennifer Pearce2, Andrew Barnecut1
1Department of Neurology, UCSF Weill Institute for Neurosciences, San Francisco, CA, United States.
Journal of Medical Internet Research
|July 7, 2020
Summary
Open MS BioScreen is a new, accessible web tool designed for people with multiple sclerosis (MS) to track their condition and make informed decisions. This human-centered approach empowers patients, clinicians, and caregivers with actionable data and precision medicine insights.
Area of Science:
- Biomedical Informatics
- Patient-Reported Outcomes
- Digital Health
Background:
- Patients with multiple sclerosis (MS) often face challenges accessing tools for disease monitoring and decision-making.
- Existing tools, like the UCSF MS BioScreen, were clinician-focused.
- There was a need for an openly available, user-friendly tool for individuals with MS.
Purpose of the Study:
- To describe the human-centered design and development of the Open MS BioScreen platform.
- To create an accessible, understandable, and actionable tool for people with MS.
- To facilitate patient engagement in managing their multiple sclerosis.
Main Methods:
- An iterative, cyclical development process involving extensive stakeholder engagement.
- Incorporated feedback from patients with MS, caregivers, clinicians, and advocacy experts.
- Utilized a phased approach: inspiration, ideation, and implementation with agile development.
Main Results:
- Developed an openly available, web-based application, Open MS BioScreen.
- Enables users to input MS-related data, visualize it longitudinally, and access decision-making algorithms.
- Integrates data from wearable devices for goal setting and ambulatory activity tracking.
Conclusions:
- The human-centered design successfully created an empowering tool for MS patients and their support network.
- Continued agile development will integrate further precision medicine tools.
- The design approach offers a model for developing self-tracking and self-management tools for various chronic conditions.
