Data linkage for research in Scotland

Introduction

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 supports 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 supports the rapid translation of our strengths across the data landscape into benefits for citizens, businesses and communities, locally and globally. The Strategic Action Plan was published in December 2014 to deliver the Vision through the effective and responsible collection, management and use of data across Scottish Public Services.

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.

Guiding principles for data linkage

Following extensive public consultation, the Guiding Principles for Data Linkage were published in 2012, demonstrating our 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 and are currently under review as part of an ongoing commitment to ensure that public data is used safely and transparently.

A Safe Haven Charter for Scotland

Published in November 2015, the Charter for Safe Havens sets out the agreed principles and standards for the routine operation of Safe Havens in Scotland where data from electronic records can be used to support research that is in the public interest.

A Health and Biomedical Informatics Research Strategy for Scotland

The Health and Biomedical Informatics and Research Strategy sets out key areas for action and specific recommendations from the Health Informatics Research Advisory Group (HIRAG) on how Scotland should respond to the opportunities and challenges around the secure use of routinely collected patient data for research