A National Network of Safe Havens: Scottish Perspective

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

^*Corresponding author for this work

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

7 Citations (Scopus)

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
Pages (from-to)	e31684
Number of pages	16
Journal	Journal of Medical Internet Research
Volume	24
Issue number	3
Early online date	9 Mar 2022
DOIs	https://doi.org/10.2196/31684
Publication status	Published - 9 Mar 2022

Bibliographical note

Acknowledgments
This work was supported by Health Data Research United Kingdom (636000/RA4624 and 636000/RA4707), which receives its funding from Health Data Research United Kingdom 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 and the Wellcome Trust. The work was supported by the Scottish Government Chief Scientist Office through the Safe Haven Metadata project.

Keywords

electronic health records
Safe Haven
data governance

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

Access to Document

10.2196/31684Licence: CC BY

Gao_etal_JMIR_A_National_Network_VoR
This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on https://www.jmir.org/, as well as this copyright and license information must be included.
Final published version, 954 KBLicence: CC BY

Grampian Data Safe Haven (DaSH)
Katie Wilde (Manager)
Institute of Applied Health Sciences
Research Facilities: Facility

Cite this

Gao, C., McGilchrist, M., Mumtaz, S., Hall, C., Anderson, L. A., Zurowski, J., Gordon, S., Lumsden, J., Munro, V., Wozniak, A., Sibley, M., Banks, C., Duncan, C., Linksted, P., Hume, A., Stables, C. L., Mayor, C., Caldwell, J., Wilde, K., ... Jefferson, E. (2022). A National Network of Safe Havens: Scottish Perspective. Journal of Medical Internet Research, 24(3), e31684. https://doi.org/10.2196/31684

Gao, C, McGilchrist, M, Mumtaz, S, Hall, C, Anderson, LA, Zurowski, J, Gordon, S, Lumsden, J, Munro, V, Wozniak, A, Sibley, M, Banks, C, Duncan, C, Linksted, P, Hume, A, Stables, CL, 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, pp. e31684. https://doi.org/10.2196/31684

@article{5b6d3229a0134d749ebe83c2f24bfad0,

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

author = "Chuang Gao and Mark McGilchrist and Shahzad Mumtaz and Christopher Hall and Anderson, {Lesley Ann} 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 Stables, {Catherine L} and Charlie Mayor and Jacqueline Caldwell and Katie Wilde and Christian Cole and Emily Jefferson",

note = "Acknowledgments This work was supported by Health Data Research United Kingdom (636000/RA4624 and 636000/RA4707), which receives its funding from Health Data Research United Kingdom 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 and the Wellcome Trust. The work was supported by the Scottish Government Chief Scientist Office through the Safe Haven Metadata project.",

year = "2022",

month = mar,

day = "9",

doi = "10.2196/31684",

language = "English",

volume = "24",

pages = "e31684",

journal = "Journal of Medical Internet Research",

issn = "1439-4456",

publisher = "Journal of medical Internet Research",

number = "3",

}

TY - JOUR

T1 - A National Network of Safe Havens

T2 - Scottish Perspective

AU - Gao, Chuang

AU - McGilchrist, Mark

AU - Mumtaz, Shahzad

AU - Hall, Christopher

AU - Anderson, Lesley Ann

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 L

AU - Mayor, Charlie

AU - Caldwell, Jacqueline

AU - Wilde, Katie

AU - Cole, Christian

AU - Jefferson, Emily

N1 - Acknowledgments This work was supported by Health Data Research United Kingdom (636000/RA4624 and 636000/RA4707), which receives its funding from Health Data Research United Kingdom 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 and the Wellcome Trust. The work was supported by the Scottish Government Chief Scientist Office through the Safe Haven Metadata 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.

KW - electronic health records

KW - Safe Haven

KW - data governance

U2 - 10.2196/31684

DO - 10.2196/31684

M3 - Article

C2 - 35262495

SN - 1439-4456

VL - 24

SP - e31684

JO - Journal of Medical Internet Research

JF - Journal of Medical Internet Research

IS - 3

ER -

A National Network of Safe Havens: Scottish Perspective

Abstract

Bibliographical note

Keywords

UN SDGs

Access to Document

Fingerprint

Equipment

Grampian Data Safe Haven (DaSH)

Cite this