ArticleBMC medical ethics2021
Secondary research use of personal medical data: patient attitudes towards data donation.
Article in BMC medical ethics, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 21 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
21 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Pooled it
- High Patient Willingness to Grant Broad Consent for Real-World Data Use in Rheumatology-Implications for Real-World Data Platform Governance: Cross-Sectional Study.Journal of medical Internet research · 2026Article
- Enabling secure and self determined health data sharing and consent management.NPJ digital medicine · 2025Review
- Worldwide willingness to share health data high but privacy, consent and transparency paramount, a meta-analysis.NPJ digital medicine · 2025Article
- Patient data for commercial companies? An ethical framework for sharing patients' data with for-profit companies for research.Journal of medical ethics · 2025Article
- The Impact of Trust and the Role of the Opt-Out Mechanism in Willingness to Share Health Data via Electronic Health Records in Germany: Telephone Survey Study.JMIR human factors · 2025Article
- Ethical considerations on the use of big data and artificial intelligence in kidney research from the ERA ethics committee.Nephrology, dialysis, transplantation : official publication of the European Dialysis and Transplant Association - European Renal Association · 2025Review
- The European Health Data Space: an opportunity to strengthen citizen rights and engage citizens in health data governance.Frontiers in medicine · 2025Article
- Health data sharing in Germany: individual preconditions, trust and motives.Frontiers in public health · 2025Article
- Bias in obtaining broad consent in a German general practice? - Preliminary results from a cross-sectional study.Journal of family medicine and primary care · 2024Article
- Ethical, Legal, and Practical Concerns Surrounding the Implemention of New Forms of Consent for Health Data Research: Qualitative Interview Study.Journal of medical Internet research · 2024Article
- How to Elucidate Consent-Free Research Use of Medical Data: A Case for "Health Data Literacy".JMIR medical informatics · 2024Article
- Attitude towards consent-free research use of personal medical data in the general German population.Heliyon · 2024Article
- Population-Based Biobanking.Genes · 2024Review
- Cluster Donation: How Future Healthcare Professionals Bound Certain Types of Tissues and Biomedical Research and How It Affects Their Willingness to Donate.Healthcare (Basel, Switzerland) · 2023Article
- What prevents us from reusing medical real-world data in research.Scientific data · 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
- Patient Perspectives and Preferences for Consent in the Digital Health Context: State-of-the-art Literature Review.Journal of medical Internet research · 2023Review
- 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
- Patients' Willingness to Provide Their Clinical Data for Research Purposes and Acceptance of Different Consent Models: Findings From a Representative Survey of Patients With Cancer.Journal of medical Internet research · 2022Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundThe SARS-CoV-2 pandemic has highlighted once more the great need for comprehensive access to, and uncomplicated use of, pre-existing patient data for medical research. Enabling secondary research-use of patient-data is a prerequisite for the efficient and sustainable promotion of translation and personalisation in medicine, and for the advancement of public-health. However, balancing the legitimate interests of scientists in broad and unrestricted data-access and the demand for individual autonomy, privacy and social justice is a great challenge for patient-based medical research.
methodsWe therefore conducted two questionnaire-based surveys among North-German outpatients (n = 650) to determine their attitude towards data-donation for medical research, implemented as an opt-out-process.
resultsWe observed a high level of acceptance (75.0%), the most powerful predictor of a positive attitude towards data-donation was the conviction that every citizen has a duty to contribute to the improvement of medical research (> 80% of participants approving data-donation). Interestingly, patients distinguished sharply between research inside and outside the EU, despite a general awareness that universities and public research institutions cooperate with commercial companies, willingness to allow use of donated data by the latter was very low (7.1% to 29.1%, depending upon location of company). The most popular measures among interviewees to counteract reservations against commercial data-use were regulation by law (61.4%), stipulating in the process that data are not sold or resold (84.6%). A majority requested control of both the use (46.8%) and the protection (41.5%) of the data by independent bodies.
conclusionsIn conclusion, data-donation for medical research, implemented as a combination of legal entitlement and easy-to-exercise-right to opt-out, was found to be widely supported by German patients and therefore warrants further consideration for a transposition into national law.
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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.