ArticleJournal of clinical oncology : official journal of the American Society of Clinical Oncology2019
Effect of Public Deliberation on Patient Attitudes Regarding Consent and Data Use in a Learning Health Care System for Oncology.
Article in Journal of clinical oncology : official journal of the American Society of Clinical Oncology, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 18 papers, 1 of them a synthesis 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
18 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
- Available guidance for ethical challenges in learning health systems: an integrative literature review.Health research policy and systems · 2026Review
- Enabling secure and self determined health data sharing and consent management.NPJ digital medicine · 2025Review
- A 4-Site Public Deliberation Project on the Acceptability of Youth Self-Consent in Biomedical HIV Prevention Trials: Assessment of Facilitator Fidelity to Key Principles.JMIR formative research · 2025Article
- Public deliberation to assess patient views on biosimilar medication switching for the treatment of inflammatory bowel disease.BMC health services research · 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
- Health Data Sharing Perspectives of Patients Receiving Care in CancerLinQ-Participating Oncology Practices.JCO oncology practice · 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
- Ethics challenges in sharing data from pragmatic clinical trials.Clinical trials (London, England) · 2022Article
- Patient consent preferences on sharing personal health information during the COVID-19 pandemic: "the more informed we are, the more likely we are to help".BMC medical ethics · 2022Article
- Patient Experiences, Trust, and Preferences for Health Data Sharing.JCO oncology practice · 2022Article
- Governance of a Learning Health Care System for Oncology: Patient Recommendations.JCO oncology practice · 2021Article
- The use of personal health information outside the circle of care: consent preferences of patients from an academic health care institution.BMC medical ethics · 2021Article
- Public Attitudes toward Consent When Research Is Integrated into Care-Any "Ought" from All the "Is"?The Hastings Center report · 2021Article
- Opening a "Can of Worms" to Explore the Public's Hopes and Fears About Health Care Data Sharing: Qualitative Study.Journal of medical Internet research · 2021Article
- Convergence of Precision Medicine and Public Health Into Precision Public Health: Toward a Big Data Perspective.Frontiers in public health · 2021Review
- Patient Preferences Regarding Informed Consent Models for Participation in a Learning Health Care System for Oncology.JCO oncology practice · 2020Article
Corrections and comments
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Authors and funding
13 authors.
Funding
Abstract
purposeWe sought to generate informed and considered opinions regarding acceptable secondary uses of deidentified health information and consent models for oncology learning health care systems.
methodsDay-long democratic deliberation sessions included 217 patients with cancer at four geographically and sociodemographically diverse sites. Patients completed three surveys (at baseline, immediately after deliberation, and 1-month follow-up).
resultsParticipants were 67.3% female, 21.7% black, and 6.0% Hispanic. The most notable changes in perceptions after deliberation related to use of deidentified medical-record data by insurance companies. After discussion, 72.3% of participants felt comfortable if the purpose was to make sure patients receive recommended care (
conclusionThis research confirms that most patients wish to be asked before deidentified medical records are used for research. Policies designed to realize the potential benefits of learning health care systems can, and should be, grounded in informed and considered public opinion.
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What OpenQuestion holds
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.