ArticleJournal of clinical oncology : official journal of the American Society of Clinical Oncology2017
Perspectives of Patients With Cancer on the Ethics of Rapid-Learning Health Systems.
Article in Journal of clinical oncology : official journal of the American Society of Clinical Oncology, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 26 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
26 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
- Lessons for a learning health system: Effectively communicating to patients about research with their health information and biospecimens.Learning health systems · 2025Article
- Addressing ethical issues in healthcare artificial intelligence using a lifecycle-informed process.JAMIA open · 2024Article
- Article
- The dilemma of consent for AI in healthcare.Surgery · 2024Article
- Use of Artificial Intelligence in Improving Outcomes in Heart Disease: A Scientific Statement From the American Heart Association.Circulation · 2024Review
- Article
- 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
- Respect, justice and learning are limited when patients are deidentified data subjects.Learning health systems · 2022Article
- The difficulties of broad data sharing in genomic medicine: Empirical evidence from diverse participants in prenatal and pediatric clinical genomics research.Genetics in medicine : official journal of the American College of Medical Genetics · 2022Article
- Respecting Autonomy And Enabling Diversity: The Effect Of Eligibility And Enrollment On Research Data Demographics.Health affairs (Project Hope) · 2021Article
- Towards a Responsible Transition to Learning Healthcare Systems in Precision Medicine: Ethical Points to Consider.Journal of personalized medicine · 2021Review
- 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
- Patient Preferences Regarding Informed Consent Models for Participation in a Learning Health Care System for Oncology.JCO oncology practice · 2020Article
- Informed consent within a learning health system: A scoping review.Learning health systems · 2020Article
- Hospitals should act now to notify patients about research use of their data and biospecimens.Nature 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
8 authors.
Funding
Abstract
Purpose To inform the evolving implementation of CancerLinQ and other rapid-learning systems for oncology care, we sought to evaluate perspectives of patients with cancer regarding ethical issues. Methods Using the GfK Group online research panel, representative of the US population, we surveyed 875 patients with cancer; 621 (71%) responded. We evaluated perceptions of appropriateness (scored from 1 to 10; 10, very appropriate) using scenarios and compared responses by age, race, and education. We constructed a scaled measure of comfort with secondary use of deidentified medical information and evaluated its correlates in a multivariable model. Results Of the sample, 9% were black and 9% Hispanic; 38% had completed high school or less, and 59% were age ≥ 65 years. Perceptions of appropriateness were highest when consent was obtained and university researchers used data to publish a research study (weighted mean appropriateness, 8.47) and lowest when consent was not obtained and a pharmaceutical company used data for marketing (weighted mean appropriateness, 2.7). Most respondents (72%) thought secondary use of data for research was very important, although those with lower education were less likely to endorse this (62% v 78%; P < .001). Overall, 35% believed it was necessary to obtain consent each time such research was to be performed; this proportion was higher among blacks/Hispanics than others (48% v 33%; P = .02). Comfort with the use of deidentified information from medical records varied by scenario and overall was associated with distrust in the health care system. Conclusion Perceptions of patients with cancer regarding secondary data use depend on the user and the specific use of the data, while also frequently differing by patient sociodemographic factors. Such information is critical to inform ongoing efforts to implement oncology learning systems.
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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.