This paper is in the following e-collection/theme issue:

Viewpoints on and Experiences with Digital Technologies in Health (79) Viewpoints and Perspectives (514) Ethics, Privacy, and Legal Issues (479) Big Data (240) eHealth Infrastructures (345) Secondary Use of Clinical Data for Research and Surveillance (367)

Published on in Vol 4, No 2 (2016): Apr-Jun

Data Safe Havens and Trust: Toward a Common Understanding of Trusted Research Platforms for Governing Secure and Ethical Health Research

Data Safe Havens and Trust: Toward a Common Understanding of Trusted Research Platforms for Governing Secure and Ethical Health Research

Data Safe Havens and Trust: Toward a Common Understanding of Trusted Research Platforms for Governing Secure and Ethical Health Research

Authors of this article:

Nathan Christopher Lea1 Author Orcid Image ;   Jacqueline Nicholls2 Author Orcid Image ;   Christine Dobbs3 Author Orcid Image ;   Nayha Sethi4, 5 Author Orcid Image ;   James Cunningham6 Author Orcid Image ;   John Ainsworth6 Author Orcid Image ;   Martin Heaven3 Author Orcid Image ;   Trevor Peacock7 Author Orcid Image ;   Anthony Peacock7 Author Orcid Image ;   Kerina Jones3 Author Orcid Image ;   Graeme Laurie4, 5 Author Orcid Image ;   Dipak Kalra8 Author Orcid Image
Article Authors Cited by (31) Tweetations (20) Metrics

Journals

  1. Jones K, Daniels H, Heys S, Lacey A, Ford D. Toward a Risk-Utility Data Governance Framework for Research Using Genomic and Phenotypic Data in Safe Havens: Multifaceted Review. Journal of Medical Internet Research 2020;22(5):e16346 View
  2. van Veen E. Observational health research in Europe: understanding the General Data Protection Regulation and underlying debate. European Journal of Cancer 2018;104:70 View
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  6. Kalkman S, Mostert M, Gerlinger C, van Delden J, van Thiel G. Responsible data sharing in international health research: a systematic review of principles and norms. BMC Medical Ethics 2019;20(1) View
  7. Jones K, Laurie G, Stevens L, Dobbs C, Ford D, Lea N. The other side of the coin: Harm due to the non-use of health-related data. International Journal of Medical Informatics 2017;97:43 View
  8. Robertson D, Giunchiglia F, Pavis S, Turra E, Bella G, Elliot E, Morris A, Atkinson M, McAllister G, Manataki A, Papapanagiotou P, Parsons M. Healthcare data safe havens: towards a logical architecture and experiment automation. The Journal of Engineering 2016;2016(11):431 View
  9. Foster J, McLeod J, Nolin J, Greifeneder E. Data work in context: Value, risks, and governance. Journal of the Association for Information Science and Technology 2018;69(12):1414 View
  10. Heeney C, Kerr S. Balancing the local and the universal in maintaining ethical access to a genomics biobank. BMC Medical Ethics 2017;18(1) View
  11. McDonnell L, Delaney B, Sullivan F. Finding and using routine clinical datasets for observational research and quality improvement. British Journal of General Practice 2018;68(668):147 View
  12. Peek N, Rodrigues P. Three controversies in health data science. International Journal of Data Science and Analytics 2018;6(3):261 View
  13. Jones K, Daniels H, Squires E, Ford D. Public Views on Models for Accessing Genomic and Health Data for Research: Mixed Methods Study. Journal of Medical Internet Research 2019;21(8):e14384 View
  14. Nind T, Sutherland J, McAllister G, Hardy D, Hume A, MacLeod R, Caldwell J, Krueger S, Tramma L, Teviotdale R, Abdelatif M, Gillen K, Ward J, Scobbie D, Baillie I, Brooks A, Prodan B, Kerr W, Sloan-Murphy D, Herrera J, McManus D, Morris C, Sinclair C, Baxter R, Parsons M, Morris A, Jefferson E. An extensible big data software architecture managing a research resource of real-world clinical radiology data linked to other health data from the whole Scottish population. GigaScience 2020;9(10) View
  15. Domingues M, Camacho R, Rodrigues P. CMIID: A comprehensive medical information identifier for clinical search harmonization in Data Safe Havens. Journal of Biomedical Informatics 2021;114:103669 View
  16. Avraam D, Wilson R, Butters O, Burton T, Nicolaides C, Jones E, Boyd A, Burton P. Privacy preserving data visualizations. EPJ Data Science 2021;10(1) View
  17. Daniels H, Jones K, Heys S, Ford D. Exploring the Use of Genomic and Routinely Collected Data: Narrative Literature Review and Interview Study. Journal of Medical Internet Research 2021;23(9):e15739 View
  18. Wagner S, Hughes F, Cortina-Borja M, Pontikos N, Struyven R, Liu X, Montgomery H, Alexander D, Topol E, Petersen S, Balaskas K, Hindley J, Petzold A, Rahi J, Denniston A, Keane P. AlzEye: longitudinal record-level linkage of ophthalmic imaging and hospital admissions of 353 157 patients in London, UK. BMJ Open 2022;12(3):e058552 View
  19. Avraam D, Jones E, Burton P. A deterministic approach for protecting privacy in sensitive personal data. BMC Medical Informatics and Decision Making 2022;22(1) View
  20. Boyer P, Donia J, Whyne C, Burns D, Shaw J. Regulatory regimes and procedural values for health-related motion data in the United States and Canada. Health Policy and Technology 2022;11(3):100648 View
  21. Kavianpour S, Sutherland J, Mansouri-Benssassi E, Coull N, Jefferson E. Next-Generation Capabilities in Trusted Research Environments: Interview Study. Journal of Medical Internet Research 2022;24(9):e33720 View
  22. Mapulanga P. Assessing health research institutions' knowledge transfer strategies from a developing country perspective: the case of Malawi. Emerald Open Research 2022;4:31 View
  23. Gao C, McGilchrist M, Mumtaz S, Hall C, Anderson L, Zurowski J, Gordon S, Lumsden J, Munro V, Wozniak A, Sibley M, Banks C, Duncan C, Linksted P, Hume A, Stables C, Mayor C, Caldwell J, Wilde K, Cole C, Jefferson E. A National Network of Safe Havens: Scottish Perspective. Journal of Medical Internet Research 2022;24(3):e31684 View
  24. Igumbor J, Bosire E, Vicente-Crespo M, Igumbor E, Olalekan U, Chirwa T, Kinyanjui S, Kyobutungi C, Fonn S. Considerations for an integrated population health databank in Africa: lessons from global best practices. Wellcome Open Research 2021;6:214 View
  25. Demmler J, Brophy S, Marchant A, John A, Tan J. 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 2020;216(2):105 View
  26. Kerasidou C, Malone M, Daly A, Tava F. 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 2023;49(12):838 View
  27. Radosevic N, Duckham M, Saiedur Rahaman M, Ho S, Williams K, Hashem T, Tao Y. Spatial data trusts: an emerging governance framework for sharing spatial data. International Journal of Digital Earth 2023;16(1):1607 View
  28. Mapulanga P. Assessing health research institutions' knowledge transfer strategies from a developing country perspective: the case of Malawi. Emerald Open Research 2023;1(2) View
  29. Mapulanga P. Assessing health research institutions' knowledge transfer strategies from a developing country perspective: the case of Malawi. Emerald Open Research 2023;1(2) View
  30. Willison D, Trowbridge J, Greiver M, Keshavjee K, Mumford D, Sullivan F. Participatory governance over research in an academic research network: the case of Diabetes Action Canada. BMJ Open 2019;9(4):e026828 View

Books/Policy Documents

  1. Day S, Smith J, Ward H. Figure. View