JMIR Publications

ABSTRACT

Background:

Patients with multiple sclerosis (MS) face a number of challenges in accessing clinical tools to help them monitor, understand, and make meaningful decisions about their disease course. The UCSF MS BioScreen is a precision medicine tool initially designed to be clinician-facing. We aimed to design an open access, publicly available tool, Open MS BioScreen, that would be accessible, understandable and actionable by people with MS.

Objective:

To describe the human-centered design and development approach (Inspiration, Ideation, and Implementation) for creating the OpenMSBioscreen.org platform.

Methods:

We planned an iterative and cyclical development process that included stakeholder engagement and iterative feedback from users. Our multi-dimensional team comprised of neurologists, a health literacy expert, a designer, a developer, and students in a translational medicine course. Stakeholders included patients with MS along with their caregivers and family members, MS experts, generalist clinicians, industry representatives, and advocacy experts. Phase I (Inspiration) consisted of empathizing with users and defining the problem. We sought to understand the main challenges that patients and clinicians faced and what they would want to see in a web application. In Phase II (Ideation), our multi-disciplinary team discussed approaches to capture, display and make sense of user data. Then we prototyped a series of mock-ups to solicit feedback from clinicians and people with MS. In Phase III (Implementation), we incorporated all concepts to test and iterate a minimally viable product (MVP). We then gathered feedback through an agile development process. The design and development were cyclical – at many times throughout the process we went back to the drawing board.

Results:

This human-centered approach generated an open access, web-based application through which patients with MS, their clinicians and their caregivers can access the site and create an account. Users can enter information about their MS (basic level as well as more advanced concepts), visualize their data longitudinally, access a series of algorithms designed to empower them to make decisions about their treatments, and enter data from wearable devices to encourage realistic goal-setting about their ambulatory activity. Agile development will allow us to continue to incorporate precision medicine tools as these are validated in the clinical research arena.

Conclusions:

After engaging intended users into iterative human-centered design of the Open MS BioScreen, we will now monitor adoption and dissemination of the tool as we expand its functionality and reach. The insights generated from this approach can be applied to the development of a number of self-tracking, self-management and engagement tools for patients with chronic conditions.