CC BY-NC-ND 4.0 · Methods Inf Med 2023; 62(05/06): 165-173
DOI: 10.1055/s-0043-1775718
Original Article for a Focus Theme

An Exploratory Study on the Utility of Patient-Generated Health Data as a Tool for Health Care Professionals in Multiple Sclerosis Care

Sharon Guardado
1   Empirical Software Engineering (M3S) Research Unit, Faculty of Information Technology and Electrical Engineering, University of Oulu, Oulu, Finland
Vasiliki Mylonopoulou
2   Division of Human-Computer Interaction, Department Of Applied Information Technology, University of Gothenburg, Gothenburg, Sweden
Octavio Rivera-Romero
3   Department of Electronic Technology, Universidad de Sevilla, Seville, Spain
4   Instituto de Investigación en Informática, Universidad de Sevilla, Seville, Spain
5   SABIEN Group, ITACA Institute, Universitat Politécnica de Valéncia, Valencia, Spain
Nadine Patt
6   Department of Neurology, Kliniken Valens, Rehabilitationszentrum Valens, Valens, Switzerland
Jens Bansi
6   Department of Neurology, Kliniken Valens, Rehabilitationszentrum Valens, Valens, Switzerland
Guido Giunti
1   Empirical Software Engineering (M3S) Research Unit, Faculty of Information Technology and Electrical Engineering, University of Oulu, Oulu, Finland
7   Health Sciences and Technology Unit, Faculty of Medicine, University of Oulu, Finland
8   Applied Ergonomics and Design, Faculty of Industrial Design Engineering, Delft University of Technology, Delft, The Netherlands
9   Clinical Medicine Neurology, School of Medicine, Trinity College Dublin, Dublin, Ireland
› Author Affiliations
Funding The More Stamina project has received funding from Business Finland, and O.R.-R. has received funding from the Universidad de Sevilla and the Ministerio de Universidades of the Spanish Government under the call “Recualificación del Sistema Español de Universidades” funded by European Union—NextGenerationEU. The study was partly funded by the EU’s Horizon 2020 Research and Innovation Programme under the Marie Skłodowska-Curie grant agreement No. 101034252 and by a research grant from Science Foundation Ireland (SFI) under Grant Number 16/RC/3948.


Background Patient-generated health data (PGHD) are data collected through technologies such as mobile devices and health apps. The integration of PGHD into health care workflows can support the care of chronic conditions such as multiple sclerosis (MS). Patients are often willing to share data with health care professionals (HCPs) in their care team; however, the benefits of PGHD can be limited if HCPs do not find it useful, leading patients to discontinue data tracking and sharing eventually. Therefore, understanding the usefulness of mobile health (mHealth) solutions, which provide PGHD and serve as enablers of the HCPs' involvement in participatory care, could motivate them to continue using these technologies.

Objective The objective of this study is to explore the perceived utility of different types of PGHD from mHealth solutions which could serve as tools for HCPs to support participatory care in MS.

Method A mixed-methods approach was used, combining qualitative research and participatory design. This study includes three sequential phases: data collection, assessment of PGHD utility, and design of data visualizations. In the first phase, 16 HCPs were interviewed. The second and third phases were carried out through participatory workshops, where PGHD types were conceptualized in terms of utility.

Results The study found that HCPs are optimistic about PGHD in MS care. The most useful types of PGHD for HCPs in MS care are patients' habits, lifestyles, and fatigue-inducing activities. Although these subjective data seem more useful for HCPs, it is more challenging to visualize them in a useful and actionable way.

Conclusion HCPs are optimistic about mHealth and PGHD as tools to further understand their patients' needs and support care in MS. HCPs from different disciplines have different perceptions of what types of PGHD are useful; however, subjective types of PGHD seem potentially more useful for MS care.

Publication History

Received: 10 October 2022

Accepted: 05 August 2023

Article published online:
25 September 2023

© 2023. The Author(s). This is an open access article published by Thieme under the terms of the Creative Commons Attribution-NonDerivative-NonCommercial License, permitting copying and reproduction so long as the original work is given appropriate credit. Contents may not be used for commercial purposes, or adapted, remixed, transformed or built upon. (

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