University of Oulu

Kuosmanen, E., Huusko, E., van Berkel, N., Nunes, F., Vega, J., Goncalves, J., Khamis, M., Esteves, A., Ferreira, D., & Hosio, S. (2023). Exploring crowdsourced self-care techniques: A study on Parkinson’s disease. In International Journal of Human-Computer Studies (Vol. 177, p. 103062). Elsevier BV.

Exploring crowdsourced self-care techniques : a study on Parkinson’s disease

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Author: Kuosmanen, Elina1; Huusko, Eetu1; van Berkel, Niels2;
Organizations: 1Center for Ubiquitous Computing, University of Oulu, Erkki Koiso-Kanttilankatu 3, Oulu, 90014, Finland
2Department of Computer Science, Aalborg University, Aalborg, Denmark
3Fraunhofer Portugal AICOS, Porto, Portugal
4Department of Medicine, University of Pittsburgh, Pittsburgh, PA, USA
5School of Computing and Information Systems, University of Melbourne, Melbourne, Australia
6University of Glasgow, Glasgow, United Kingdom
7University of Lisbon, Lisbon, Portugal
Format: article
Version: published version
Access: open
Online Access: PDF Full Text (PDF, 2.8 MB)
Persistent link:
Language: English
Published: Elsevier, 2023
Publish Date: 2023-09-28


Living with Parkinson’s Disease introduces a range of significant challenges into one’s daily life. While medical interventions exist to overcome some of these challenges, patient self-care techniques often form an essential complement to the treatments recommended by medical doctors. Knowledge on these self-care techniques often originates from those living with Parkinson’s themselves or their close caregivers, as they have the knowledge and experience required to assess self-care techniques. This so-called ‘patient knowledge’ is usually exchanged in peer meetings or discussion forums. Although vital to the Parkinson’s Disease community, this information is often difficult to access due to its unstructured format and the difficulty of navigating through online forums. We present an online tool that allows for contributing, assessing, and finally discovering Parkinson’s Disease self-care techniques. The custom discovery tool was populated with self-care knowledge by over 300 people with Parkinson’s and dozens of their carers, spanning areas such as daily well-being and using assistive equipment. Then, we invited patients to explore the discover features in a smaller scale trial. While well-received, our deployment highlighted several challenges that we further discuss in this paper. Overall, our study contributes to crowdsourced digital health solutions and provides both design and research implications to this challenging domain with a vulnerable user group.

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Series: International journal of human-computer studies
ISSN: 1071-5819
ISSN-E: 1095-9300
ISSN-L: 1071-5819
Volume: 177
Article number: 103062
DOI: 10.1016/j.ijhcs.2023.103062
Type of Publication: A1 Journal article – refereed
Field of Science: 3121 General medicine, internal medicine and other clinical medicine
213 Electronic, automation and communications engineering, electronics
Funding: This research is connected to the GenZ strategic profiling project at the University of Oulu, Finland, supported by the Academy of Finland, Finland (project number 318930), and CRITICAL (Academy of Finland Strategic Research, Finland, 335729). Part of the work was also carried out with the support of Biocenter Oulu, spearhead project ICON, Finland.
Academy of Finland Grant Number: 335729
Detailed Information: 335729 (Academy of Finland Funding decision)
Dataset Reference: Majority of the collected data is available in the tool.
Copyright information: © 2023 The Authors. Published by Elsevier Ltd. This is an open access article under the CC BY license (