Electronic health record technology designed for the clinical encounter: MS neuroSHARE

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.