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.

Data Resource Profile: The Hospital Electronic Prescribing and Medicines Administration (HEPMA) National Data Collection in Scotland

“…These administrative datasets are frequently used for quality assurance (e.g., auditing), benchmarking (national statistics), and research. Population coverage and content of specific datasets, available time frames, and data quality – as well as possibilities for linkages – have been described in detail elsewhere [ 7 , 18 , 20 , 21 ].…”

“…Once the application has been approved, data are extracted and provided to researchers in anonymised form as flat files, usually in .csv format. Access will be made available through the National Safe Haven, a secure, closed environment designed to safeguard the data [ 21 , 28 ]; analytical software including, for example, SPSS, Stata and R/R Studio (Posit) as well as standard MS Office applications are available within this environment. Although the National Safe Haven can be accessed remotely (certain restrictions apply), it is only available from within the UK; researchers from other countries aiming to analyse linked datasets from Scotland would need to collaborate with a researcher/institution situated in the UK.…”

Diabetes care: is big data the future?

“…4 In Scotland, a network of four regional and one National Safe Haven (NSH) which have been developed over the last 10 years is a good example of how data from a whole range of sources can be kept secure and used for a wide range of purposes. 10,11 The NSH has access to national administrative data such as births, deaths and marriages as well as all Scottish Morbidity Records and prescribing data. At a local level the regional safe havens have access to detailed health phenotype data from clinical systems on patients receiving care within their areas.…”

Cohort profile: The Scottish SHARE Mental Health (SHARE-MH) cohort – linkable survey, genetic and routinely collected data for mental health research

“…Finally, there is also a drive to make data access easier and more secure by connecting Trusted Research Environments together. Notably, this allows linkage of new sources of data and federation of analyses across multiple cohorts without the need to move data 16 17…”