A Scotland-wide Data Linkage Framework for Statistics and Research: Consultation Paper on the Aims and Guiding Principles

Summary Overview

Scottish Government is working with a wide range of partners to establish a collaborative framework that will facilitate data linkages for research and statistical purposes to be conducted safely, securely, legally, ethically and efficiently.

It is in the public interest both to safeguard individuals' right to privacy and to make efficient use of data for statistical and research purposes. The Data Linkage Framework aims to help every-one involved in data linkage to balance these values; to provide the public with assurance that personal data are being used safely and appropriately; and to provide a common framework of principles and standards that data custodians and users can work within.

Data linkage is already widely used in the health sector, and Scotland has an international reputation as a leader in linkage-based research. But there is scope to extend the use of data linkage within and between sectors and to develop the methods collaboratively. The framework is broad, and is intended to provide multiple benefits to a wide range of stakeholders. The aims of the data linkage framework are to:

a. Speed up cycles of improvement through the delivery of a higher quality cross-sectoral evidence base to inform public policy and strategic spending decisions

b. Enable better use of existing data to develop efficient and reliable methods of producing demographic and census-type statistics

c. Increase the power of statistics available to all

d. Allow relatively low cost longitudinal research to be conducted both retrospectively and prospectively, informing preventative spend

e. Increase the capacity to robustly evaluate the costs, benefits and risks of new health, social, educational and associated programmes

f. Provide exemplars of research excellence, enhancing Scotland's reputation and attracting investment and job creation to Scotland

The foundation of the Framework will be a set of principles which provide common standards for safe and effective data linkage and which will underpin a robust governance mechanism that reflects and promotes the core values in play.

The main purpose of this consultation is to seek views on the aims of the Data Linkage Framework and a draft set of guiding principles.

Once a set of principles has been agreed, the details of the other parts of the framework (a National Data Linkage Centre and an Analytical Privacy Advisory Service) will be developed. Comments to help develop plans for both of these are welcome at this stage, but there will be further opportunity to comment when more details have emerged.

This written consultation is just one part of a broader and on-going dialogue with a wide range of organisations and individuals. Responses to this consultation paper are invited by Friday 15 June 2012.