ArticleAMIA ... Annual Symposium proceedings. AMIA Symposium2014
Sharing my health data: a survey of data sharing preferences of healthy individuals.
Article in AMIA ... Annual Symposium proceedings. AMIA Symposium, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 32 papers, 2 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
32 citing papers in PubMed, 2 syntheses or guidelines 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
- 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
- Worldwide willingness to share health data high but privacy, consent and transparency paramount, a meta-analysis.NPJ digital medicine · 2025Article
- Genetic discrimination in insurance and employment based on personalized risk stratification for breast cancer screening.Frontiers in genetics · 2025Article
- Policy Preferences Regarding Health Data Sharing Among Patients With Cancer: Public Deliberations.JMIR cancer · 2023Article
- Perspectives on Privacy in the Post-Roe Era: A Mixed-Methods of Machine Learning and Qualitative Analyses of Tweets.AMIA ... Annual Symposium proceedings. AMIA Symposium · 2023Article
- Public Views About Involvement in Decision-Making on Health Data Sharing, Access, Use and Reuse: The Importance of Trust in Science and Other Institutions.Frontiers in public health · 2022Article
- Article
- Exploring public concerns for sharing and governance of personal health information: a focus group study.JAMIA open · 2021Article
- Ethical Issues in Patient Data Ownership.Interactive journal of medical research · 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
- Perspectives of Pregnant and Breastfeeding Women on Participating in Longitudinal Mother-Baby Studies Involving Electronic Health Records: Qualitative Study.JMIR pediatrics and parenting · 2021Article
- Privacy versus Convenience: A Historical Perspective, Analysis of Risks, and an Informatics Call to Action.Applied clinical informatics · 2021Article
- Patient Preferences Regarding Informed Consent Models for Participation in a Learning Health Care System for Oncology.JCO oncology practice · 2020Article
- Non-Hispanic White Mothers' Willingness to Share Personal Health Data With Researchers: Survey Results From an Opt-in Panel.Journal of participatory medicine · 2020Article
- Obtaining and managing data sets for individual participant data meta-analysis: scoping review and practical guide.BMC medical research methodology · 2020Article
- Children's rare disease cohorts: an integrative research and clinical genomics initiative.NPJ genomic medicine · 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
- Health Care Professionals' Perspectives on the Secondary Use of Health Records to Improve Quality and Safety of Care in England: Qualitative Study.Journal of medical Internet research · 2019Article
- Perceptions and Preferences About Granular Data Sharing and Privacy of Behavioral Health Patients.Studies in health technology and informatics · 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
3 authors.
Funding
Abstract
We interviewed 70 healthy volunteers to understand their choices about how the information in their health record should be shared for research. Twenty-eight survey questions captured individual preferences of healthy volunteers. The results showed that respondents felt comfortable participating in research if they were given choices about which portions of their medical data would be shared, and with whom those data would be shared. Respondents indicated a strong preference towards controlling access to specific data (83%), and a large proportion (68%) indicated concern about the possibility of their data being used by for-profit entities. The results suggest that transparency in the process of sharing is an important factor in the decision to share clinical data for research.
Indexed as
Identifiers
25954442PMC4419941What 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.