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. 2020 Jul 6;22(7):e15605.
doi: 10.2196/15605.

A Precision Medicine Tool for Patients With Multiple Sclerosis (the Open MS BioScreen): Human-Centered Design and Development

Erica Schleimer  1 , Jennifer Pearce  2 , Andrew Barnecut  1 , William Rowles  1 , Antoine Lizee  1 , Arno Klein  3 , Valerie J Block  1 , Adam Santaniello  1 , Adam Renschen  1 , Refujia Gomez  1 , Anisha Keshavan  1 , Jeffrey M Gelfand  1 , Roland G Henry  1 , Stephen L Hauser  1 , Riley Bove  1
Affiliations

A Precision Medicine Tool for Patients With Multiple Sclerosis (the Open MS BioScreen): Human-Centered Design and Development

Erica Schleimer et al. J Med Internet Res. .

Abstract

Background: Patients with multiple sclerosis (MS) face several challenges in accessing clinical tools to help them monitor, understand, and make meaningful decisions about their disease course. The University of California San Francisco MS BioScreen is a web-based precision medicine tool initially designed to be clinician facing. We aimed to design a second, openly available tool, Open MS BioScreen, that would be accessible, understandable, and actionable by people with MS.

Objective: This study aimed to describe the human-centered design and development approach (inspiration, ideation, and implementation) for creating the Open MS BioScreen platform.

Methods: We planned an iterative and cyclical development process that included stakeholder engagement and iterative feedback from users. Stakeholders included patients with MS along with their caregivers and family members, MS experts, generalist clinicians, industry representatives, and advocacy experts. Users consisted of anyone who wants to track MS measurements over time and access openly available tools for people with MS. Phase I (inspiration) consisted of empathizing with users and defining the problem. We sought to understand the main challenges faced by patients and clinicians and what they would want to see in a web-based app. In phase II (ideation), our multidisciplinary 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. We then gathered feedback through an agile development process. The design and development were cyclical-many times throughout the process, we went back to the drawing board.

Results: This human-centered approach generated an openly available, web-based app 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 the iterative human-centered design of the Open MS BioScreen, we will now monitor the adaptation 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 user engagement tools for patients with chronic conditions.

Keywords: human factors; human-centered design; mobile phone; participatory medicine; personal health record; visualization in eHealth.

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Conflict of interest statement

Conflicts of Interest: JG reports consulting fees from Biogen and Alexion, research support (to UCSF) from Genentech, service contract support (to UCSF) from MedDay, honoraria for editorial work from Dynamed Plus, and personal compensation for medical-legal consulting. RH reports research grants from Roche and MedDay and consulting fees from Roche, Novartis, and Sanofi. SH serves on the board of trustees for Neurona and on scientific advisory boards for Alector, Annexon, Bionure, Molecular Stethoscope, and Symbiotix and has received travel reimbursement and writing assistance from F Hoffmann-La Roche Ltd for CD20-related meetings and presentations. RB has received research support from the National Multiple Sclerosis Society, the Conrad N. Hilton Foundation, the California Initiative to Advance Precision Medicine, the Sherak Foundation, and Akili Interactive. RB has also received personal compensation for consulting from Novartis, Sanofi Genzyme, Roche Genentech, and Pear Therapeutics. All other authors have no conflicts of interest to declare.

Figures

Figure 1
Figure 1
The human-centered design process for Open MS BioScreen.
Figure 2
Figure 2
Open MS BioScreen features. EDSS: expanded disability status scale; prEDSS: patient-reported expanded disability status scale.
Figure 3
Figure 3
Phase II: Ideation. Evolution of Open MS BioScreen mock-ups. Top panel: landing page. Middle panel: longitudinal disease course visualization and contextualization tool. Bottom panel: assessment and representation of global neurological function.
Figure 4
Figure 4
Phase III: Implementation screenshots of Open MS BioScreen’s initial minimally viable product. Top panel: landing page and initial data entry tools. Middle panel: the longitudinal multiple sclerosis course visualization tool, without a contextualization tool. Bottom panel: the patient-reported expanded disability status scale tool, whose development occurred as part of Open MS BioScreen and whose formal clinical validation is reported separately (manuscript under review).
Figure 5
Figure 5
Additional features developed after the Open MS BioScreen live data. The top panel depicts the step count comparison tool that allows patients to enter their daily step count and compare this with others from a cohort of patients with multiple sclerosis (MS) at their phase of the disease [35]. The middle panel depicts My MS Paths, a visualization narrating specific decisions and challenges that patients may face over their lifetime living with MS. The bottom panel shows links to algorithms and clinical decision support tools developed by other investigators that provided complementary information and for which links were provided on Open MS BioScreen.
See this image and copyright information in PMC

References

    1. Hauser SL, Goodin D. Multiple sclerosis and other demyelinating diseases. In: Jameson JL, Fauci A, Hauser S, Longo D, Kasper D, Loscalzo J, editors. Harrison's Principles of Internal Medicine. New York, USA: McGraw-Hill Education; 2012.
    1. Giunti G, Fernández EG, Zubiete ED, Romero OR. Supply and demand in mhealth apps for persons with multiple sclerosis: systematic search in app stores and scoping literature review. JMIR Mhealth Uhealth. 2018 May 23;6(5):e10512. doi: 10.2196/10512. https://mhealth.jmir.org/2018/5/e10512/ - DOI - PMC - PubMed
    1. McBurney R, Zhao Y, Loud S, Balasubramanian R, Schmidt H, Kolaczkowski L. Initial Characterization of Participants in the iConquerMS Network. Proceedings of the Americas Committee for Treatment and Research in Multiple Sclerosis; ACTRIMS'17; February 23-25, 2017; Orlando, FL. 2017. https://actrims.confex.com/actrims/2017/meetingapp.cgi/Paper/1914
    1. Vollmer TL, Ni W, Stanton S, Hadjimichael O. The NARCOMS patient registry: a resource for investigators. Int J MS Care. 1999 Sep;1(1):28–34. doi: 10.7224/1537-2073-1.1.28. - DOI
    1. Wicks P, Massagli M, Frost J, Brownstein C, Okun S, Vaughan T, Bradley R, Heywood J. Sharing health data for better outcomes on PatientsLikeMe. J Med Internet Res. 2010 Jun 14;12(2):e19. doi: 10.2196/jmir.1549. https://www.jmir.org/2010/2/e19/ - DOI - PMC - PubMed

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