ArticleBMC medical ethics2017
Factors affecting willingness to share electronic health data among California consumers.
Article in BMC medical ethics, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 45 papers, 4 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
45 citing papers in PubMed, 4 syntheses or guidelines pooled it, 89 citations in OpenAlex.
- 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
- Measuring the willingness to share personal health information: a systematic review.Frontiers in public health · 2023Pooled it
- Ethical issues in biomedical research using electronic health records: a systematic review.Medicine, health care, and philosophy · 2021Pooled it
- Does an interactive trust-enhanced electronic consent improve patient experiences when asked to share their health records for research? A randomized trial.Journal of the American Medical Informatics Association : JAMIA · 2019Trial
- Exploring patient motivations and preferences for medical data sharing with researchers: a simulation study using the iAgree platform.Journal of the American Medical Informatics Association : JAMIA · 2026Article
- Public Attitudes and Predictors of Public Awareness of Personal Digital Health Data Sharing for Research: Cross-Sectional Study in Japan.JMIR human factors · 2025Article
- Community Comfort With Automatic Sharing of Race, Ethnicity, and Language Data Between Health Care Settings: Cross-Sectional Study.Interactive journal of medical research · 2025Article
- Determinants of consent for electronic health information exchange: an observational retrospective study.Health research policy and systems · 2025Observational
- User Experiences and Attitudes Toward Sharing Wearable Activity Tracker Data with Healthcare Providers: A Cross-Sectional Study.Healthcare (Basel, Switzerland) · 2025Article
- Digital Health Platform for Maternal Health: Design, Recruitment Strategies, and Lessons Learned From the PowerMom Observational Cohort Study.JMIR formative research · 2025Observational
- Patterns of willingness to share health data with key stakeholders in US consumers: a latent class analysis.Journal of the American Medical Informatics Association : JAMIA · 2025Article
- Consent mechanisms and default effects in health information exchange in Japan.Frontiers in digital health · 2025Article
- Collection and sharing of health information in mental health and related systems in Australia: perspectives of people who access mental health services.BMC psychiatry · 2024Article
- Willingness of population health survey participants to provide personal health information and biological samples.BMC public health · 2024Article
- Patient Preferences and Priorities for the Design of an Acute Kidney Injury Prevention Trial: Findings from a Consensus Workshop.Kidney360 · 2024Article
- Health data sharing attitudes towards primary and secondary use of data: a systematic review.EClinicalMedicine · 2024Article
- Health Data Sharing Perspectives of Patients Receiving Care in CancerLinQ-Participating Oncology Practices.JCO oncology practice · 2023Article
- Article
- Patient Perspectives and Preferences for Consent in the Digital Health Context: State-of-the-art Literature Review.Journal of medical Internet research · 2023Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors at 3 institutions in 1 country.
Funding
Abstract
backgroundRobust technology infrastructure is needed to enable learning health care systems to improve quality, access, and cost. Such infrastructure relies on the trust and confidence of individuals to share their health data for healthcare and research. Few studies have addressed consumers' views on electronic data sharing and fewer still have explored the dual purposes of healthcare and research together. The objective of the study is to explore factors that affect consumers' willingness to share electronic health information for healthcare and research.
methodsThis study involved a random-digit dial telephone survey of 800 adult Californians conducted in English and Spanish. Logistic regression was performed using backward selection to test for significant (p-value ≤ 0.05) associations of each explanatory variable with the outcome variable.
resultsThe odds of consent for electronic data sharing for healthcare decreased as Likert scale ratings for EHR impact on privacy worsened, odds ratio (OR) = 0.74, 95% CI [0.60, 0.90]; security, OR = 0.80, 95% CI [0.66, 0.98]; and quality, OR = 0.59, 95% CI [0.46-0.75]. The odds of consent for sharing for research was greater for those who think EHR will improve research quality, OR = 11.26, 95% CI [4.13, 30.73]; those who value research benefit over privacy OR = 2.72, 95% CI [1.55, 4.78]; and those who value control over research benefit OR = 0.49, 95% CI [0.26, 0.94].
conclusionsConsumers' choices about electronically sharing health information are affected by their attitudes toward EHRs as well as beliefs about research benefit and individual control. Design of person-centered interventions utilizing electronically collected health information, and policies regarding data sharing should address these values of importance to people. Understanding of these perspectives is critical for leveraging health data to support learning health care systems.
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Identifiers
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.