Scotland is internationally recognised for its rich data and strengths in informatics. Indeed, Scotland has long been a pioneer in the use of linked health service data for statistical research. This has resulted in our well-established capacity to use data linkage in evaluating interventions for the benefit of the population’s health.
Data linkage allows for the true value of our existing data to be realised. The Scottish Government are enabling responsible, efficient and effective data linkage by:
• improving the ethical and legal governance arrangements around data linkage
• supporting increases in the technical capacity to securely and efficiently link statistical and administrative data
This approach enables the research needed to inform policy decisions and service delivery, supporting our ambitions for a Scotland that is Wealthier and Fairer, Smarter, Healthier, Safer and Stronger and Greener. Moreover, this will strengthen our world-class reputation as a hub of innovation and powerful statistical research, improving sustainable economic development so that all of Scotland can flourish.
The Scottish Government is involved in supporting and delivering the following strategies and initiatives:
A Data Vision for Scotland
The Scottish Government established a Data Management Board to support Scotland’s advancement in the current global data revolution. In April 2014, the Board proposed a Data Vision for Scotland. This Vision will support trustworthy uses of data for public benefit, helping to maintain and enhance Scotland’s reputation for the safe, secure and transparent use of data. This Vision will support the rapid translation of our strengths across the data landscape into benefits for citizens, businesses and communities, locally and globally. An action plan for implementation is currently being drafted (September 2014).
Data Linkage Strategy
Following public consultation the Scottish Government published Joined Up Data for Better Decisions in 2012. This Strategy sets out our ambitions for making better use of data that already exists in Scotland. The Data Linkage Framework was established as a mechanism to deliver this.
The Data Linkage Framework
Following development of the Data Linkage Framework (as outlined in the Strategy) there has been a marked increase in collaborative working, sharing of best practice and joined-up approaches to resource investment across a number of key public sector organisations underpinning data linkage across Scotland.
The Guiding Principles for Data Linkage
Following extensive public consultation, the Guiding Principles for Data Linkage were published in 2012, demonstrating the Scottish Government’s commitment to improving the decision making process for data users and data controllers in-line with increasing technical capacity. The Guiding Principles were developed to ensure that statistical and administrative data can be securely and efficiently linked for public benefit.
Good practice examples of the Guiding Principles being applied can be found here:
A Safe Haven Charter for Scotland
Following on from the publication of the Guiding Principles for Data Linkage, in 2014 the Health Informatics Research Advisory Group (HIRAG) expert report to the Chief Scientist Office and eHealth Strategy Board of Scottish Government recommended that a federated network of Safe Havens was created to support the linkage of health data for research. A ‘safe haven’ is a secure physical location that embraces standards of operation that ensure that confidential personal information is handled safely with appropriate levels of electronic security.
A Safe Haven Charter for Scotland will build on this guidance and is targeted primarily at the linkage of health datasets to other health or non-health related datasets. It seeks to provide more detail on how Safe Havens for data sharing, linkage and analysis will function in Scotland, and what governance, processes and safeguards public organisations, such as NHS Health Boards, need to put in place to allow the trustworthy use of personal data for research.
A Safe Haven Charter for Scotland is due to be published towards the end of 2014.