ArticleJournal of personalized medicine2015
Public trust in health information sharing: implications for biobanking and electronic health record systems.
Article in Journal of personalized medicine, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 38 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
38 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
- Mapping of Crowdsourcing in Health: Systematic Review.Journal of medical Internet research · 2018Pooled it
- The critical need for an open medical imaging database in Japan: implications for global health and AI development.Japanese journal of radiology · 2025Article
- I don't mind my information going to the Moon, but I don't want any letters from Mars: a qualitative exploration of the challenges with secondary use of health data in Ireland.Archives of public health = Archives belges de sante publique · 2025Article
- Reusing routine electronic health record data for nationwide COVID-19 surveillance in nursing homes: barriers, facilitators, and lessons learned.BMC medical informatics and decision making · 2024Article
- Article
- Improving Public Trust in Biobanking: Roundtable Discussions from the 2021 ISBER Annual Meeting.Biopreservation and biobanking · 2023Article
- Policy Preferences Regarding Health Data Sharing Among Patients With Cancer: Public Deliberations.JMIR cancer · 2023Article
- "Consent Does Not Scale": Laying Out the Tensions in Balancing Patient Autonomy with Public Benefit in Commercializing Biospecimens.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2023Review
- Building public trust and confidence in secondary use of health data for healthcare improvement and research: a qualitative study pre-protocol.HRB open research · 2023Article
- Paving the way for increased e-health record use: elaborating intentions of Gen-Z.Health systems (Basingstoke, England) · 2023Article
- Color coded health data: factors related to willingness to share health information in South Asian community members in Canada.International journal of population data science · 2023Article
- Sustained agreement rates in the longitudinal assessment of lupus patients to a Broad Consent for personal data and specimen usage in the RHINEVIT biobank.Frontiers in medicine · 2023Article
- Accommodating time-varying heterogeneity in risk estimation under the Cox model: a transfer learning approach.Journal of the American Statistical Association · 2023Article
- Perceptions, attitudes, and willingness of the public in low- and middle-income countries of the Arab region to participate in biobank research.BMC medical ethics · 2022Article
- Identifying primary care datasets and perspectives on their secondary use: a survey of Australian data users and custodians.BMC medical informatics and decision making · 2022Article
- Experience of clinical services shapes attitudes to mental health data sharing: findings from a UK-wide survey.BMC public health · 2022Article
- Factors Associated With Willingness to Share Health Information: Rapid Review.JMIR human factors · 2022Review
- Obligations of the "Gift": Reciprocity and Responsibility in Precision Medicine.The American journal of bioethics : AJOB · 2021Article
- Governing Personalized Health: A Scoping Review.Frontiers in genetics · 2021Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
2 authors.
Funding
Abstract
Biobanks are made all the more valuable when the biological samples they hold can be linked to health information collected in research, electronic health records, or public health practice. Public trust in such systems that share health information for research and health care practice is understudied. Our research examines characteristics of the general public that predict trust in a health system that includes researchers, health care providers, insurance companies and public health departments. We created a 119-item survey of predictors and attributes of system trust and fielded it using Amazon's MTurk system (n = 447). We found that seeing one's primary care provider, having a favorable view of data sharing and believing that data sharing will improve the quality of health care, as well as psychosocial factors (altruism and generalized trust) were positively and significantly associated with system trust. As expected, privacy concern, but counterintuitively, knowledge about health information sharing were negatively associated with system trust. We conclude that, in order to assure the public's trust, policy makers charged with setting best practices for governance of biobanks and access to electronic health records should leverage critical access points to engage a diverse public in joint decision making.
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.