Objectives:Advances in medical discoveries have bolstered expectations of precise and complete care, but delivering on such a promise for complex, chronic neurological care delivery requires solving last-mile challenges. We describe the iterative human-centered design and pilot process for MS neuroSHARE, a digital health solution that brings practical information to the point-of-care so clinicians and patients with multiple sclerosis (MS) can view, discuss and make informed decisions together.Methods:We initiated a comprehensive human-centered process to iteratively design, develop and implement a digital health solution for managing MS in the routine outpatient setting of the nonprofit Sutter Health system in Northern California. The human-centered co-design process included three phases: Discovery and Design, Development, and Implementation and Pilot. Stakeholders included Sutter Health’s Research Development and Dissemination team, academic domain experts, neurologists, patients with MS, and an Advisory Group.Results:MS neuroSHARE went live in November 2018. It included a patient- and clinician-facing web application that launches from the electronic health record, visually displays a patient’s data relevant to MS, and prompts the clinician to comprehensively evaluate and treat the patient. Both patients and clinicians valued the ability to jointly view patient-generated and other data. Preliminary results suggest that MS neuroSHARE promotes patient-clinician communication and more active patient participation in decision-making.Conclusions:Lessons learned in the design and implementation of MS NeuroSHARE are broadly applicable to the design and implementation of digital tools aiming to improve the experience of delivering and receiving high-quality care for complex, neurological conditions across large health systems.

This study explores the experience of the breast cancer journey for younger women receiving patient navigation services in a healthcare delivery system and any remaining challenges that navigation services may leave unaddressed. In this qualitative analysis, we used a purposeful sampling approach to conduct a semistructured in-person interview with 19 younger women (under 50 years at the time of diagnosis) at various stages of breast cancer treatment and receiving care that included some form of patient navigation services/within the Sutter Health system. Thematic analysis was performed using an inductive grounded theory approach. The patient experience revealed that women receiving navigation services throughout their cancer journey had little concern related to clinical decision-making and treatment. Rather, emotional, and logistical challenges dominate their experience and perceptions of the cancer journey. Managing day-to-day life and the emotional aspects of a cancer diagnosis cannot be disentangled from clinical care. Navigating the emotional and logistical aspects of the cancer journey is an ongoing unmet need for women under age 50, and navigation services can potentially be enhanced to help address these specific needs. Women with breast cancer may benefit from navigation programs focused not only on clinically related challenges but also on recognizing the daily needs of younger women and guiding them through family and job-related obstacles encountered while navigating cancer care. Health systems could enhance existing nurse navigation programs and redesign other aspects of care to focus on meeting these needs.

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