Trial reportJournal of oncology practice2015
Are Patients With Cancer Less Willing to Share Their Health Information? Privacy, Sensitivity, and Social Purpose.
Trial report in Journal of oncology practice, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 26 papers, 3 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
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
26 citing papers in PubMed, 3 syntheses or guidelines pooled it, 42 citations in OpenAlex.
- Patient and Public Willingness to Share Personal Health Data for Third-Party or Secondary Uses: Systematic Review.Journal of medical Internet research · 2024Pooled it
- Measuring the willingness to share personal health information: a systematic review.Frontiers in public health · 2023Pooled it
- State of the art and a mixed-method personalized approach to assess patient perceptions on medical record sharing and sensitivity.Journal of biomedical informatics · 2020Pooled it
- Consent to Medical Data Processing Among Adult Primary Care Patients: Associations with Vaccination Behaviour and Healthcare Trust.Healthcare (Basel, Switzerland) · 2026Article
- Patient Perceptions and Acceptance of Blockchain-Based Health Data Sharing in Oncology: Cross-Sectional Survey.JMIR formative research · 2026Article
- Acceptability of Sharing Internet Browsing History for Cancer Research: Think-Aloud and Interview Study.JMIR cancer · 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
- Application of Geographic Information Systems (GIS) in the Study of Prostate Cancer Disparities: A Systematic Review.Cancers · 2024Review
- How patients distinguish between clinical and administrative predictive models in health care.The American journal of managed care · 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
- Returning study results to research participants: Data access, format, and sharing preferences.International journal of medical informatics · 2023Article
- Building trust in research through information and intent transparency with health information: representative cross-sectional survey of 502 US adults.Journal of the American Medical Informatics Association : JAMIA · 2022Article
- Control Matters in Elder Care Technology:: Evidence and Direction for Designing It In.DIS. Designing Interactive Systems (Conference) · 2022Article
- Willingness to Travel for Cellular Therapy: The Influence of Follow-Up Care Location, Oncologist Continuity, and Race.JCO oncology practice · 2022Article
- Cancer Patient Perspectives on Sharing of Medical Records and Mobile Device Data for Research Purposes.Journal of patient experience · 2020Article
- A Comparative Analysis of Online Medical Record Utilization and Perception by Cancer Survivorship.Medical care · 2020Article
- "My Research Is Their Business, but I'm Not Their Business": Patient and Clinician Perspectives on Commercialization of Precision Oncology Data.The oncologist · 2020Article
- Artificial Intelligence in Skin Cancer Diagnostics: The Patients' Perspective.Frontiers in medicine · 2020Article
- Patient and Provider Perspectives Regarding Enrollment in Head and Neck Cancer Research.Otolaryngology--head and neck surgery : official journal of American Academy of Otolaryngology-Head and Neck Surgery · 2020Article
- Effect of Public Deliberation on Patient Attitudes Regarding Consent and Data Use in a Learning Health Care System for Oncology.Journal of clinical oncology : official journal of the American Society of Clinical Oncology · 2019Article
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 at 2 institutions in 1 country.
Funding
Abstract
purposeGrowing use of electronic health information increases opportunities to build population cancer databases for research and care delivery. Understanding patient views on reuse of health information is essential to shape privacy policies and build trust in these initiatives.
methodsWe randomly assigned nationally representative participants (N = 3,336) with and without prior cancer to six of 18 scenarios describing different uses of electronic health information. The scenarios varied the user, use, and sensitivity of the information. Participants rated each scenario on a scale of 1 to 10 assessing their willingness to share their electronic health information. We used conjoint analysis to measure the relative importance of each attribute (ie, use, user, and sensitivity).
resultsParticipants with and without a prior diagnosis of cancer had a similar willingness to share health information (0.27; P = .42). Both cancer and noncancer participants rated the purpose of information use as the most important factor (importance weights, 67.1% and 45.6%, respectively). For cancer participants, the sensitivity of the information was more important (importance weights, 29.8% v 1.2%). However, cancer participants were more willing to share their health information when the information included more sensitive genetic information (0.48; P = .015). Cancer and noncancer respondents rated uses and users similarly.
conclusionThe information sharing preferences of participants with and without a prior diagnosis of cancer were driven mainly by the purpose of information reuse. Although conventional thinking suggests patients with cancer might be less willing to share their health information, we found participants with cancer were more willing to share their inherited genetic information.
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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.