A National Network of Safe Havens: Scottish Perspective

Chuang Gao; Mark McGilchrist; Shahzad Mumtaz; Christopher Hall; Lesley Anderson; John Zurowski; Sharon Gordon; Joanne Lumsden; Vicky Munro; Artur Wozniak; Michael Sibley; Christopher Banks; Chris Duncan; Pamela Linksted; Alastair Hume; Catherine Stables; Charlie Mayor; Jacqueline Caldwell; Katie Wilde; Christian Cole; Emily Jefferson

doi:10.2196/31684

A National Network of Safe Havens: Scottish Perspective

Chuang Gao, Mark McGilchrist, Shahzad Mumtaz, Christopher Hall, Lesley Anderson, John Zurowski, Sharon Gordon, Joanne Lumsden, Vicky Munro, Artur Wozniak, Michael Sibley, Christopher Banks, Chris Duncan, Pamela Linksted, Alastair Hume, Catherine Stables, Charlie Mayor, Jacqueline Caldwell, Katie Wilde, Christian ColeEmily Jefferson (Lead / Corresponding author)

Research output: Contribution to journal › Article › peer-review

10 Citations (Scopus)

218 Downloads (Pure)

Abstract

For over a decade, Scotland has implemented and operationalized a system of Safe Havens, which provides secure analytics platforms for researchers to access linked, deidentified electronic health records (EHRs) while managing the risk of unauthorized reidentification. In this paper, a perspective is provided on the state-of-the-art Scottish Safe Haven network, including its evolution, to define the key activities required to scale the Scottish Safe Haven network's capability to facilitate research and health care improvement initiatives. A set of processes related to EHR data and their delivery in Scotland have been discussed. An interview with each Safe Haven was conducted to understand their services in detail, as well as their commonalities. The results show how Safe Havens in Scotland have protected privacy while facilitating the reuse of the EHR data. This study provides a common definition of a Safe Haven and promotes a consistent understanding among the Scottish Safe Haven network and the clinical and academic research community. We conclude by identifying areas where efficiencies across the network can be made to meet the needs of population-level studies at scale.

Original language	English
Article number	e31684
Number of pages	16
Journal	Journal of Medical Internet Research
Volume	24
Issue number	3
Early online date	Dec 2021
DOIs	https://doi.org/10.2196/31684
Publication status	Published - 9 Mar 2022

Keywords

Safe Haven
data governance
electronic health records

ASJC Scopus subject areas

Health Informatics

Access to Document

10.2196/31684Licence: CC BY

Final Published VersionFinal published version, 954 KBLicence: CC BY

Cite this

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., ... Jefferson, E. (2022). A National Network of Safe Havens: Scottish Perspective. Journal of Medical Internet Research, 24(3), Article e31684. https://doi.org/10.2196/31684

@article{f4bf594a69074531a2df7c7e22f6ddec,

title = "A National Network of Safe Havens: Scottish Perspective",

abstract = "For over a decade, Scotland has implemented and operationalized a system of Safe Havens, which provides secure analytics platforms for researchers to access linked, deidentified electronic health records (EHRs) while managing the risk of unauthorized reidentification. In this paper, a perspective is provided on the state-of-the-art Scottish Safe Haven network, including its evolution, to define the key activities required to scale the Scottish Safe Haven network's capability to facilitate research and health care improvement initiatives. A set of processes related to EHR data and their delivery in Scotland have been discussed. An interview with each Safe Haven was conducted to understand their services in detail, as well as their commonalities. The results show how Safe Havens in Scotland have protected privacy while facilitating the reuse of the EHR data. This study provides a common definition of a Safe Haven and promotes a consistent understanding among the Scottish Safe Haven network and the clinical and academic research community. We conclude by identifying areas where efficiencies across the network can be made to meet the needs of population-level studies at scale.",

keywords = "Safe Haven, data governance, electronic health records",

author = "Chuang Gao and Mark McGilchrist and Shahzad Mumtaz and Christopher Hall and Lesley Anderson and John Zurowski and Sharon Gordon and Joanne Lumsden and Vicky Munro and Artur Wozniak and Michael Sibley and Christopher Banks and Chris Duncan and Pamela Linksted and Alastair Hume and Catherine Stables and Charlie Mayor and Jacqueline Caldwell and Katie Wilde and Christian Cole and Emily Jefferson",

note = "This work was supported by Health Data Research UK (HDR UK: 636000/ RA4624 and 636000/ RA4707) which receives its funding from HDR UK Ltd (HDR-5012) funded by the UK Medical Research Council, Engineering and Physical Sciences Research Council, Economic and Social Research Council, Department of Health and Social Care (England), Chief Scientist Office of the Scottish Government Health and Social Care Directorates, Health and Social Care Research and Development Division (Welsh Government), Public Health Agency (Northern Ireland), British Heart Foundation (BHF) and the Wellcome Trust. The work was supported by the Scottish Government Chief Scientist Office (CSO) through the SHEMA project.",

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month = mar,

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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 2022, 'A National Network of Safe Havens: Scottish Perspective', Journal of Medical Internet Research, vol. 24, no. 3, e31684. https://doi.org/10.2196/31684

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T2 - Scottish Perspective

AU - Gao, Chuang

AU - McGilchrist, Mark

AU - Mumtaz, Shahzad

AU - Hall, Christopher

AU - Anderson, Lesley

AU - Zurowski, John

AU - Gordon, Sharon

AU - Lumsden, Joanne

AU - Munro, Vicky

AU - Wozniak, Artur

AU - Sibley, Michael

AU - Banks, Christopher

AU - Duncan, Chris

AU - Linksted, Pamela

AU - Hume, Alastair

AU - Stables, Catherine

AU - Mayor, Charlie

AU - Caldwell, Jacqueline

AU - Wilde, Katie

AU - Cole, Christian

AU - Jefferson, Emily

N1 - This work was supported by Health Data Research UK (HDR UK: 636000/ RA4624 and 636000/ RA4707) which receives its funding from HDR UK Ltd (HDR-5012) funded by the UK Medical Research Council, Engineering and Physical Sciences Research Council, Economic and Social Research Council, Department of Health and Social Care (England), Chief Scientist Office of the Scottish Government Health and Social Care Directorates, Health and Social Care Research and Development Division (Welsh Government), Public Health Agency (Northern Ireland), British Heart Foundation (BHF) and the Wellcome Trust. The work was supported by the Scottish Government Chief Scientist Office (CSO) through the SHEMA project.

PY - 2022/3/9

Y1 - 2022/3/9

N2 - For over a decade, Scotland has implemented and operationalized a system of Safe Havens, which provides secure analytics platforms for researchers to access linked, deidentified electronic health records (EHRs) while managing the risk of unauthorized reidentification. In this paper, a perspective is provided on the state-of-the-art Scottish Safe Haven network, including its evolution, to define the key activities required to scale the Scottish Safe Haven network's capability to facilitate research and health care improvement initiatives. A set of processes related to EHR data and their delivery in Scotland have been discussed. An interview with each Safe Haven was conducted to understand their services in detail, as well as their commonalities. The results show how Safe Havens in Scotland have protected privacy while facilitating the reuse of the EHR data. This study provides a common definition of a Safe Haven and promotes a consistent understanding among the Scottish Safe Haven network and the clinical and academic research community. We conclude by identifying areas where efficiencies across the network can be made to meet the needs of population-level studies at scale.

AB - For over a decade, Scotland has implemented and operationalized a system of Safe Havens, which provides secure analytics platforms for researchers to access linked, deidentified electronic health records (EHRs) while managing the risk of unauthorized reidentification. In this paper, a perspective is provided on the state-of-the-art Scottish Safe Haven network, including its evolution, to define the key activities required to scale the Scottish Safe Haven network's capability to facilitate research and health care improvement initiatives. A set of processes related to EHR data and their delivery in Scotland have been discussed. An interview with each Safe Haven was conducted to understand their services in detail, as well as their commonalities. The results show how Safe Havens in Scotland have protected privacy while facilitating the reuse of the EHR data. This study provides a common definition of a Safe Haven and promotes a consistent understanding among the Scottish Safe Haven network and the clinical and academic research community. We conclude by identifying areas where efficiencies across the network can be made to meet the needs of population-level studies at scale.

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ER -

A National Network of Safe Havens: Scottish Perspective

Abstract

Keywords

ASJC Scopus subject areas

Access to Document

Other files and links

Fingerprint

MICA: InterdisciPlInary Collaboration for EfficienT and Effective Use of Clinical Images in Big Data Health Care RESearch: PICTURES (Programme Grant) (Joint with Universities of Edinburgh and Abertay)

Defining and Redefining Disease Using Multimodal Data on a National Scale: The HDR UK Phenomics Resource (Implementation Project) (Joint with University College London and University of Edinburgh)

Creating a National Platform for Molecular Studies of Multiple Conditions; HDR UK Multiomics Consortium (Joint with University of Cambridge, University of Edinburgh and Wellcome Sanger Institute)

A National Network of Safe Havens: A Scottish Perspective

Health Informatics Centre

Cite this

A National Network of Safe Havens: Scottish Perspective

Abstract

Keywords

ASJC Scopus subject areas

Access to Document

Other files and links

Fingerprint

Projects

MICA: InterdisciPlInary Collaboration for EfficienT and Effective Use of Clinical Images in Big Data Health Care RESearch: PICTURES (Programme Grant) (Joint with Universities of Edinburgh and Abertay)

Defining and Redefining Disease Using Multimodal Data on a National Scale: The HDR UK Phenomics Resource (Implementation Project) (Joint with University College London and University of Edinburgh)

Creating a National Platform for Molecular Studies of Multiple Conditions; HDR UK Multiomics Consortium (Joint with University of Cambridge, University of Edinburgh and Wellcome Sanger Institute)

Research output

A National Network of Safe Havens: A Scottish Perspective

Equipment

Health Informatics Centre

Cite this