A Digital Patient Portal for Patients With Multiple Sclerosis.

Isabel Voigt,Hannes Schlieter,Tim Scheplitz,Raimar Kern,Sophie Frankowitz,Martin Benedict,Tjalf Ziemssen,Marcel Susky,Olaf Müller

doi:10.3389/fneur.2020.00400

Isabel Voigt, Hannes Schlieter + Show 7 more

Open Access

https://doi.org/10.3389/fneur.2020.00400

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Abstract

Background: Multiple Sclerosis is a chronic inflammatory disease of the central nervous system that requires a complex, differential, and lifelong treatment strategy, which involves high monitoring efforts and the accumulation of numerous medical data. A fast and broad availability of care, as well as patient-relevant data and a stronger integration of patients and participating care providers into the complex treatment process is desirable. The aim of the ERDF-funded project “Integrated Care Portal Multiple Sclerosis” (IBMS) was to develop a pathway-based care model and a corresponding patient portal for MS patients and health care professionals (HCPs) as a digital tool to deliver the care model.Methods: The patient portal was created according to a patient-centered design approach which involves both the patients' and the professionals' view. Buurmann's five iterative phases were integrated into a design science research process. A problem analysis focusing on functions and user interfaces was conducted through surveys and workshops with MS patients and HCPs. Based on this, the patient portal was refined and a prototype of the portal was implemented using an agile software development strategy.Results: HCPs and patients already use digital hardware and are open to new technologies. Nevertheless, they desire improved (digital) communication and coordination between care providers. Both groups require a number of functions for the patient portal, which were implemented in the prototype. Usability tests with patients and HCPs are planned to consider whether the portal is deemed as usable, acceptable as well as functional to prepare for any needed ameliorations.Discussion: After testing the patient portal for usability, acceptability, and functionality, it will most likely be a useful and high-quality electronic health (eHealth) tool for patient management from day care to telerehabilitation. It implements clinical pathways in a manner which is comprehensible for patients. Future developments of the patient portal modules could include additional diseases, the integration of quality management and privacy management tools, and the use of artificial intelligence to personalize treatment strategies.

Highlights

Multiple Sclerosis (MS) is a chronic inflammatory, neurodegenerative disease of the central nervous system which leads to a wide range of neurological deficits
This paper describes the conception of the patient portal based on current knowledge of patient portals and clinical pathways, as well as an existing documentation system (Multiple Sclerosis Documentation System, MSDS3D) [27, 28] and a developed MS case record (c.f. section Theory)
A patient portal for MS patients and health care professionals (HCPs) was developed based on the current knowledge of patient portals and clinical pathways, the existing documentation system MSDS3D, a MS case record, and the investigation of user needs and concerns

Summary

Introduction

Multiple Sclerosis (MS) is a chronic inflammatory, neurodegenerative disease of the central nervous system which leads to a wide range of neurological deficits. It is typically diagnosed in young adult patients between the ages of 20 and 40, and, for the most part, it initially follows a relapsing course. The often decades-long, unpredictable disease course requires ongoing and long-term monitoring, assessment, and management, preferably with digital applications for health care professionals (HCPs) as well as patients [6, 7]. Multiple Sclerosis is a chronic inflammatory disease of the central nervous system that requires a complex, differential, and lifelong treatment strategy, which involves high monitoring efforts and the accumulation of numerous medical data. The aim of the ERDF-funded project “Integrated Care Portal Multiple Sclerosis” (IBMS) was to develop a pathway-based care model and a corresponding patient portal for MS patients and health care professionals (HCPs) as a digital tool to deliver the care model

Methods

Results

Conclusion