Bove Riley, Bruce Christa A, Lunders Chelsea K, Pearce Jennifer R, Liu Jacqueline, Schleimer Erica, Hauser Stephen L, Stewart Walter F, Jones J B
Weill Institute for Neurosciences (RB, ES, SLH), Department of Neurology, University of California, San Francisco; Center for Health System Research (CAB, CKL, JL, JBJ), Sutter Health, Sacramento, CA; Plain Language Health (JRP), Pleasant Hill, CA; and Medcurio, Inc. (WFS), Oakland, CA.
Neurol Clin Pract. 2021 Aug;11(4):318-326. doi: 10.1212/CPJ.0000000000000986.
Advances in medical discoveries have bolstered expectations of precise and complete care, but delivering on such a promise for complex, chronic neurologic care delivery requires solving last-mile challenges. We describe the iterative human-centered design and pilot process for multiple sclerosis (MS) NeuroShare, a digital health solution that brings practical information to the point of care so that clinicians and patients with MS can view, discuss, and make informed decisions together.
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 codesign process included 3 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.
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.
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, neurologic conditions across large health systems.
医学发现的进步提升了人们对精准和全面护理的期望，但要在复杂的慢性神经疾病护理中兑现这一承诺，还需解决最后一公里的挑战。我们描述了多发性硬化症（MS）NeuroShare的迭代式以人为本的设计和试点过程，这是一种数字健康解决方案，可将实用信息带到护理点，以便临床医生和MS患者能够共同查看、讨论并做出明智的决策。
我们启动了一个全面的以人为本的过程，以迭代方式设计、开发并实施一种数字健康解决方案，用于在北加利福尼亚非营利性萨特健康系统的常规门诊环境中管理MS。以人为本的协同设计过程包括三个阶段：发现与设计、开发、实施与试点。利益相关者包括萨特健康的研究开发与传播团队、学术领域专家、神经科医生、MS患者以及一个咨询小组。
MS NeuroShare于2018年11月上线。它包括一个面向患者和临床医生的网络应用程序，该程序从电子健康记录启动，直观显示与MS相关的患者数据，并促使临床医生对患者进行全面评估和治疗。患者和临床医生都重视能够共同查看患者生成的数据和其他数据的功能。初步结果表明，MS NeuroShare促进了患者与临床医生之间的沟通以及患者更积极地参与决策。
在MS NeuroShare的设计和实施过程中吸取的经验教训广泛适用于旨在改善大型医疗系统中复杂神经疾病高质量护理的提供和接受体验的数字工具的设计和实施。
