ArticleJournal of patient experience2020
Cancer Patient Perspectives on Sharing of Medical Records and Mobile Device Data for Research Purposes.
Article in Journal of patient experience, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 17 papers, 1 of them a synthesis 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
17 citing papers in PubMed, 1 synthesis or guideline pooled 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
- Towards the Future of Cancer Care: A Concept Paper for the Proposal of a Medical and Public Health Cancer Genomics Platform.Health science reports · 2026Article
- Implementing broad consent for research with routinely collected clinical data and residual biosamples in a cancer hospital: using mixed methods approach to evaluate consent rates and patients' perspectives.BMC medical ethics · 2026Article
- Research opportunities in precision oncology: perspectives on biospecimen and genomic data sharing from adults with cancer in Ireland.Irish journal of medical science · 2025Article
- Data Sharing, Biopsies and Patient Confidentiality in a Precision Medicine Trial for Childhood Cancer: A Mixed Method Study of Parents, Oncologists, and Scientists' Perspectives.Journal of personalized medicine · 2025Article
- Worldwide willingness to share health data high but privacy, consent and transparency paramount, a meta-analysis.NPJ digital medicine · 2025Article
- Article
- Participant Contributions to Person-Generated Health Data Research Using Mobile Devices: Scoping Review.Journal of medical Internet research · 2025Article
- Disparities and Determinants of Online Medical Record Access among Cancer Survivors.Healthcare (Basel, Switzerland) · 2024Article
- Health Research with Data in a Time of Privacy: Which Information do Patients Want?Journal of empirical research on human research ethics : JERHRE · 2023Article
- Patient and researcher stakeholder preferences for use of electronic health record data: a qualitative study to guide the design and development of a platform to honor patient preferences.Journal of the American Medical Informatics Association : JAMIA · 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
- Patient Perspectives and Preferences for Consent in the Digital Health Context: State-of-the-art Literature Review.Journal of medical Internet research · 2023Review
- Patients' Willingness to Provide Their Clinical Data for Research Purposes and Acceptance of Different Consent Models: Findings From a Representative Survey of Patients With Cancer.Journal of medical Internet research · 2022Article
- Public attitudes towards sharing loyalty card data for academic health research: a qualitative study.BMC medical ethics · 2022Article
- Sharing, reuse, and storage of biosamples among biomedical researchers in Jordan: Practice and concerns.PloS one · 2022Article
- A Canadian Prospective Study of Linkage of Randomized Clinical Trial to Cancer and Mortality Registry Data.Current oncology (Toronto, Ont.) · 2021Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Sharing data is critical to advancing science, improving health, and creating advances in the delivery of health care services. The value of sharing data for cancer research purposes is well established, and there are multiple initiatives under way that address this need. However, there has been less focus on cancer patient perspectives regarding the sharing of their health information for research purposes. This study examined cancer patient perspectives on the sharing of de-identified health data for research purposes including both data from medical records and mobile applications. This cross-sectional study used survey methodology to collect data from cancer patients/survivors (N = 677). Overall, we found that participants were largely willing (71%) to share de-identified medical data and were most motivated (88%) by a desire to help other cancer patients. Patients were less likely to be comfortable sharing mobile application data (34%). It is vital that we understand patient perspectives on data sharing and work with them as partners, valuing their unique contributions, and attending to their preferences.
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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.