ArticleJCO oncology practice2022
Patient Experiences, Trust, and Preferences for Health Data Sharing.
Article in JCO oncology practice, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers.
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
8 citing papers in PubMed.
- Facilitators and Barriers of Using Smart Bedside Station Systems Among Hospitalized Patients: A Qualitative Study Based on UTAUT.Journal of general internal medicine · 2026Article
- Consent to Medical Data Processing Among Adult Primary Care Patients: Associations with Vaccination Behaviour and Healthcare Trust.Healthcare (Basel, Switzerland) · 2026Article
- Healthcare consumers' perceptions and experiences of an Australian prescription drug monitoring program: a cross-sectional survey.Frontiers in digital health · 2026Article
- Comfort With Sharing Food Insecurity Risk for Clinical Care Among Individuals With and Without a Cancer History: Findings From a National Survey.AJPM focus · 2025Article
- Attitudes, Awareness, and Willingness of Iranians Toward Using Telemedicine in Post-COVID Era: A Cross-Sectional Study.Health science reports · 2025Article
- "I Just Assumed This Was Already Being Done": Canadian Patient Preferences for Enhanced Data Sharing for Precision Oncology.JCO precision oncology · 2024Article
- Data sharing in cancer research: A qualitative study exploring community members' preferences.Cancer medicine · 2024Article
- Health Data Sharing Perspectives of Patients Receiving Care in CancerLinQ-Participating Oncology Practices.JCO oncology practice · 2023Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
12 authors.
Funding
Abstract
purposeScholars have examined patients' attitudes toward secondary use of routinely collected clinical data for research and quality improvement. Evidence suggests that trust in health care organizations and physicians is critical. Less is known about experiences that shape trust and how they influence data sharing preferences. MATERIALS AND
methodsTo explore learning health care system (LHS) ethics, democratic deliberations were hosted from June 2017 to May 2018. A total of 217 patients with cancer participated in facilitated group discussion. Transcripts were coded independently. Finalized codes were organized into themes using interpretive description and thematic analysis. Two previous analyses reported on patient preferences for consent and data use; this final analysis focuses on the influence of personal lived experiences of the health care system, including interactions with providers and insurers, on trust and preferences for data sharing.
resultsQualitative analysis identified four domains of patients' lived experiences raised in the context of the policy discussions: (1) the quality of care received, (2) the impact of health care costs, (3) the transparency and communication displayed by a provider or an insurer to the patient, and (4) the extent to which care coordination was hindered or facilitated by the interchange between a provider and an insurer. Patients discussed their trust in health care decision makers and their opinions about LHS data sharing.
conclusionAdditional resources, infrastructure, regulations, and practice innovations are needed to improve patients' experiences with and trust in the health care system. Those who seek to build LHSs may also need to consider improvement in other aspects of care delivery.
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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.