ArticleBMC medical informatics and decision making2019
"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.
Article in BMC medical informatics and decision making, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 20 papers, 1 of them a synthesis that pooled it.
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
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Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
20 citing papers in PubMed, 1 synthesis or guideline pooled it, 51 citations in OpenAlex.
- How Self-tracking and the Quantified Self Promote Health and Well-being: Systematic Review.Journal of medical Internet research · 2021Pooled it
- Patients' and Health Care Professionals' Experiences of a Digital Self-Management System for Asthma: Qualitative Study.JMIR human factors · 2026Article
- In-person when necessary and available, remotely when possible - How telemedicine can support palliative care for persons with Parkinson's disease: a qualitative study.BMC palliative care · 2026Article
- Making patient experience actionable: applying importance-performance analysis to guide improvements in Swedish healthcare.Frontiers in health services · 2026Article
- Bridging Ontologies of Neurological Conditions: Towards Patient-centered Data Practices in Digital Phenotyping Research and Design.Proceedings of the ACM on human-computer interaction · 2025Article
- Remote real time digital monitoring fills a critical gap in the management of Parkinson's disease.NPJ Parkinson's disease · 2025Article
- A systematic review on patient and public attitudes toward health monitoring technologies across countries.NPJ digital medicine · 2025Article
- Optimizing wrist-worn wearable compliance with insights from two Parkinson's disease cohort studies.NPJ Parkinson's disease · 2025Article
- Person-Centered Web-Based Mobile Health System (Symptoms) for Reporting Symptoms in COVID-19 Vaccinated Individuals: Observational Study of System, Users, and Symptoms.JMIR formative research · 2024Observational
- Balancing feeling 'prepared' without feeling 'devoured': A qualitative study of self-care from the perspective of self-empowered persons living with Parkinson's disease in Sweden.Health expectations : an international journal of public participation in health care and health policy · 2024Article
- Usability and utility of a remote monitoring system to support physiotherapy for people with Parkinson's disease.Frontiers in neurology · 2023Article
- Hopamine as Personalized Medicine for Persons with Parkinson's Disease.Journal of Parkinson's disease · 2023Article
- Need for personalized monitoring of Parkinson's disease: the perspectives of patients and specialized healthcare providers.Frontiers in neurology · 2023Article
- The state of telemedicine for persons with Parkinson's disease.Current opinion in neurology · 2021Review
- Deep Phenotyping of Parkinson's Disease.Journal of Parkinson's disease · 2020Review
- Ethical Aspects of Personal Science for Persons with Parkinson's Disease: What Happens When Self-Tracking Goes from Selfcare to Publication?Journal of Parkinson's diseaseArticle
- A Long Way to Go: Patient Perspectives on Digital Health for Parkinson's Disease.Journal of Parkinson's diseaseReview
- Domotics, Smart Homes, and Parkinson's Disease.Journal of Parkinson's diseaseReview
- Review
- Patient-Centered Identification of Meaningful Regulatory Endpoints for Medical Devices to Treat Parkinson's Disease.MDM policy & practiceArticle
Corrections and comments
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Authors and funding
4 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundThis 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.
methodA 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.
resultWe 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.
conclusionThe 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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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.