ArticleJournal of medical Internet research2020
Bringing Code to Data: Do Not Forget Governance.
Article in Journal of medical Internet research, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 13 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
13 citing papers in PubMed, 21 citations in OpenAlex.
- Dissolution of Continuity of Ethical Governance in Data Science Health Research: Diagnostic and Response Framework for Lifecycle Oversight.Journal of medical Internet research · 2026Article
- The Continuity Trap in Data Science Health Research.Journal of medical Internet research · 2026Article
- Anonymization, accountability, and access: legal dimensions of health data sharing in federated networks. Perspectives from empirical study.Frontiers in digital health · 2026Article
- A scoping review of the governance of federated learning in healthcare.NPJ digital medicine · 2025Article
- A call to action to scale up research and clinical genomic data sharing.Nature reviews. Genetics · 2025Review
- Reconciling the biomedical data commons and the GDPR: three lessons from the EUCAN ELSI collaboratory.European journal of human genetics : EJHG · 2024Article
- Essential requirements for the governance and management of data trusts, data repositories, and other data collaborations.International journal of population data science · 2023Article
- Leveraging Algorithms to Improve Decision-Making Workflows for Genomic Data Access and Management.Biopreservation and biobanking · 2022Article
- Federated analysis of BRCA1 and BRCA2 variation in a Japanese cohort.Cell genomics · 2022Article
- The multidimensional legal nature of personal genomic sequence data: A South African perspective.Frontiers in genetics · 2022Article
- Identifying and addressing data asymmetries so as to enable (better) science.Frontiers in big data · 2022Review
- International federation of genomic medicine databases using GA4GH standards.Cell genomics · 2021Article
- Lessons from federated networks for implementing the European health data space. Empirical study.Digital healthArticle
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 at 2 institutions in 2 countries.
Funding
Abstract
Developing or independently evaluating algorithms in biomedical research is difficult because of restrictions on access to clinical data. Access is restricted because of privacy concerns, the proprietary treatment of data by institutions (fueled in part by the cost of data hosting, curation, and distribution), concerns over misuse, and the complexities of applicable regulatory frameworks. The use of cloud technology and services can address many of the barriers to data sharing. For example, researchers can access data in high performance, secure, and auditable cloud computing environments without the need for copying or downloading. An alternative path to accessing data sets requiring additional protection is the model-to-data approach. In model-to-data, researchers submit algorithms to run on secure data sets that remain hidden. Model-to-data is designed to enhance security and local control while enabling communities of researchers to generate new knowledge from sequestered data. Model-to-data has not yet been widely implemented, but pilots have demonstrated its utility when technical or legal constraints preclude other methods of sharing. We argue that model-to-data can make a valuable addition to our data sharing arsenal, with 2 caveats. First, model-to-data should only be adopted where necessary to supplement rather than replace existing data-sharing approaches given that it requires significant resource commitments from data stewards and limits scientific freedom, reproducibility, and scalability. Second, although model-to-data reduces concerns over data privacy and loss of local control when sharing clinical data, it is not an ethical panacea. Data stewards will remain hesitant to adopt model-to-data approaches without guidance on how to do so responsibly. To address this gap, we explored how commitments to open science, reproducibility, security, respect for data subjects, and research ethics oversight must be re-evaluated in a model-to-data context.
Indexed as
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.