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01.12.2019 | Research article | Ausgabe 1/2019 Open Access

BMC Medical Informatics and Decision Making 1/2019

“You have to know why you're doing this”: a mixed methods study of the benefits and burdens of self-tracking in Parkinson's disease

BMC Medical Informatics and Decision Making > Ausgabe 1/2019
Sara Riggare, Therese Scott Duncan, Helena Hvitfeldt, Maria Hägglund
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The online version of this article (https://​doi.​org/​10.​1186/​s12911-019-0896-7) contains supplementary material, which is available to authorized users.

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This study explores opinions and experiences of people with Parkinson’s disease (PwP) in Sweden of using self-tracking. Parkinson’s disease (PD) is a neurodegenerative condition entailing varied and changing symptoms and side effects that can be a challenge to manage optimally. Patients’ self-tracking has demonstrated potential in other diseases, but we know little about PD self-tracking. The aim of this study was therefore to explore the opinions and experiences of PwP in Sweden of using self-tracking for PD.


A mixed methods approach was used, combining qualitative data from seven interviews with quantitative data from a survey to formulate a model for self-tracking in PD. In total 280 PwP responded to the survey, 64% (n = 180) of which had experience from self-tracking.


We propose a model for self-tracking in PD which share distinctive characteristics with the Plan-Do-Study-Act (PDSA) cycle for healthcare improvement. PwP think that tracking takes a lot of work and the right individual balance between burdens and benefits needs to be found. Some strategies have here been identified; to focus on positive aspects rather than negative, to find better solutions for their selfcare, and to increase the benefits through improved tools and increased use of self-tracking results in the dialogue with healthcare.


The main identified benefits are that self-tracking gives PwP a deeper understanding of their own specific manifestations of PD and contributes to a more effective decision making regarding their own selfcare. The process of self-tracking also enables PwP to be more active in communicating with healthcare. Tracking takes a lot of work and there is a need to find the right balance between burdens and benefits.
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