ArticleJMIR medical informatics2016
Data Safe Havens and Trust: Toward a Common Understanding of Trusted Research Platforms for Governing Secure and Ethical Health Research.
Article in JMIR medical informatics, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 22 papers, 1 of them a synthesis 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
22 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Responsible data sharing in international health research: a systematic review of principles and norms.BMC medical ethics · 2019Pooled it
- Predicting future dementia from routine clinical MRI and linked healthcare data.Alzheimer's research & therapy · 2026Article
- There is urgent need for a Global Data Resource for Antimicrobial PK/PD: CAMO-Net GDR Initiative.Nature communications · 2025Article
- Machine learning models, trusted research environments and UK health data: ensuring a safe and beneficial future for AI development in healthcare.Journal of medical ethics · 2023Article
- Advancing cross-sectoral data linkage to understand and address the health impacts of social exclusion: Challenges and potential solutions.International journal of population data science · 2023Article
- Next-Generation Capabilities in Trusted Research Environments: Interview Study.Journal of medical Internet research · 2022Article
- AlzEye: longitudinal record-level linkage of ophthalmic imaging and hospital admissions of 353 157 patients in London, UK.BMJ open · 2022Article
- A National Network of Safe Havens: Scottish Perspective.Journal of medical Internet research · 2022Article
- A deterministic approach for protecting privacy in sensitive personal data.BMC medical informatics and decision making · 2022Article
- Exploring the Use of Genomic and Routinely Collected Data: Narrative Literature Review and Interview Study.Journal of medical Internet research · 2021Review
- Privacy preserving data visualizations.EPJ data science · 2021Article
- Considerations for an integrated population health databank in Africa: lessons from global best practices.Wellcome open research · 2021Article
- Article
- Toward a Risk-Utility Data Governance Framework for Research Using Genomic and Phenotypic Data in Safe Havens: Multifaceted Review.Journal of medical Internet research · 2020Review
- The European medical information framework: A novel ecosystem for sharing healthcare data across Europe.Learning health systems · 2020Article
- Shining the light on eating disorders, incidence, prognosis and profiling of patients in primary and secondary care: national data linkage study.The British journal of psychiatry : the journal of mental science · 2020Article
- Public Views on Models for Accessing Genomic and Health Data for Research: Mixed Methods Study.Journal of medical Internet research · 2019Article
- Participatory governance over research in an academic research network: the case of Diabetes Action Canada.BMJ open · 2019Article
- Challenges in accessing routinely collected data from multiple providers in the UK for primary studies: Managing the morass.International journal of population data science · 2018Article
- Finding and using routine clinical datasets for observational research and quality improvement.The British journal of general practice : the journal of the Royal College of General Practitioners · 2018Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
12 authors.
Funding
Abstract
In parallel with the advances in big data-driven clinical research, the data safe haven concept has evolved over the last decade. It has led to the development of a framework to support the secure handling of health care information used for clinical research that balances compliance with legal and regulatory controls and ethical requirements while engaging with the public as a partner in its governance. We describe the evolution of 4 separately developed clinical research platforms into services throughout the United Kingdom-wide Farr Institute and their common deployment features in practice. The Farr Institute is a case study from which we propose a common definition of data safe havens as trusted platforms for clinical academic research. We use this common definition to discuss the challenges and dilemmas faced by the clinical academic research community, to help promote a consistent understanding of them and how they might best be handled in practice. We conclude by questioning whether the common definition represents a safe and trustworthy model for conducting clinical research that can stand the test of time and ongoing technical advances while paying heed to evolving public and professional concerns.
Indexed as
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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.