ArticleInternational journal of telemedicine and applications2018
Patient Perspectives on Health Data Privacy and Management: "Where Is My Data and Whose Is It?"
Article in International journal of telemedicine and applications, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 13 papers, 2 of them syntheses that pooled it.
What it found
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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.
The trial behind it
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.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
13 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Patients' perspectives on medication adherence feedback interventions for managing long-term medications: a systematic review of qualitative evidence.International journal of clinical pharmacy · 2026Pooled it
- Patient and Public Willingness to Share Personal Health Data for Third-Party or Secondary Uses: Systematic Review.Journal of medical Internet research · 2024Pooled it
- Perspectives on Health Data Sharing Among Patients With Somatic and Mental Health Diseases: Focus Group Study.Journal of medical Internet research · 2026Article
- Patient-Driven Sharing of Health Information: A National Effort to Advance Equitable Interoperability.Applied clinical informatics · 2025Article
- What are patient perspectives on privacy and trust in digital genomic tools? A qualitative study.Journal of genetic counseling · 2025Article
- The Association of Psychological Factors With Willingness to Share Health-Related Data From Technological Devices: Cross-Sectional Questionnaire Study.JMIR formative research · 2025Article
- Stakeholders' perceptions of personal health data sharing: A scoping review.PLOS digital health · 2024Article
- Patients' perspectives on digital health tools.PEC innovation · 2023Article
- Patients' and Members of the Public's Wishes Regarding Transparency in the Context of Secondary Use of Health Data: Scoping Review.Journal of medical Internet research · 2023Article
- Attitudes of Patients With Chronic Heart Failure Toward Digital Device Data for Self-documentation and Research in Germany: Cross-sectional Survey Study.JMIR cardio · 2022Article
- Developing a sensor-based mobile application for in-home frailty assessment: a qualitative study.BMC geriatrics · 2021Article
- Cancer Patient Perspectives on Sharing of Medical Records and Mobile Device Data for Research Purposes.Journal of patient experience · 2020Article
- A review of attitudes towards the reuse of health data among people in the European Union: The primacy of purpose and the common good.Health policy (Amsterdam, Netherlands) · 2019Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
New technologies are increasingly evaluated for use within the clinical practice to monitor patients' medical and lifestyle data. This development could contribute to a more personalized approach to patient care and potentially improve health outcomes. To date, patient perspective on this development has mostly been neglected in the literature. Hence, this study aims to shed more light on the patient perspective on health data privacy and management. Focus groups with cardiac patients were done at the Elizabeth TweeSteden Ziekenhuis (ETZ) in the Netherlands as part of the DoCHANGE project. The focus groups were conducted using a semistructured protocol which was organized around three themes: privacy regulations, data storage, and transparency and privacy management. Five focus groups with a total of 23 patients were conducted. The majority of the patients preferred to have access to their medical data; however, the knowledge on who has access to data was limited. Patients indicated that they do not want to share their medical data with health insurance companies or the pharmaceutical industry. Furthermore, most patients do not see the added value of supplementing their medical dossier with lifestyle data. Current findings showed patients prefer access to and control over own data but that the knowledge concerning data privacy and management is limited. Sharing of non-medical health data (e.g.,, physical activity) was considered unnecessary. Future studies should address patient preferences and develop infrastructure which facilitates medical data access for patients.
Identifiers
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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.