A Digital Patient Portal for Patients With Multiple Sclerosis

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

doi:10.3389/fneur.2020.00400

A Digital Patient Portal for Patients With Multiple Sclerosis

Front Neurol. 2020 May 22:11:400. doi: 10.3389/fneur.2020.00400. eCollection 2020.

Authors

Isabel Voigt¹, Martin Benedict², Marcel Susky², Tim Scheplitz², Sophie Frankowitz³, Raimar Kern³, Olaf Müller⁴, Hannes Schlieter², Tjalf Ziemssen¹

Affiliations

¹ Department of Neurology, Center of Clinical Neuroscience, University Hospital Carl Gustav Carus, Technical University of Dresden, Dresden, Germany.
² Chair of Wirtschaftsinformatik, Especially Systems Development, Faculty of Business and Economics, Technical University of Dresden, Dresden, Germany.
³ MedicalSyn GmbH, Dresden, Germany.
⁴ Carus Consilium GmbH, Dresden, Germany.

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.

Keywords: chronic disease; clinical pathway; digital technology; eHealth; multiple sclerosis; neurological disease; patient engagement; patient portals.