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Joined up data for better decisions

Answering the important questions for Scotland through legal, secure, ethical and efficient data linkage

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Scotland-wide Data Linkage Framework

 Our vision for the future is one where evidence of what works in delivering positive outcomes for all of Scotland is delivered quickly and efficiently with minimal burden on front-line services. By improving the ethical and legal governance arrangements, and the technical capacity to securely and efficiently link statistical data, we will enable the research needed to inform policy decisions. Scotland will be recognised the world over as a hub of innovative and powerful statistical research, attracting investment and job creation.

 

We have an ambition to build on existing successful programmes collaboratively to create a culture where legal, ethical, and secure data-linkage is accepted and expected

  • By fostering collaboration between existing data linkage programmes and initiatives we will co-ordinate what is currently a fragmented landscape of activities to achieve immediate benefits through the sharing of ideas, solutions, best practice and methods.  
  • By encouraging collaboration in the use and procurement of data linkage ICT across the public sector, we will avoid unnecessary duplication and so reduce purchasing and running costs.
  • By increasing the value of datasets, increasing the wealth of good practice and experience in data linkage research, and demonstrating that Scotland is a world-leader in this field, we will continue to encourage research investment into Scotland.

We have an ambition to minimise the risks to privacy and enhance transparency, by driving up standards in data sharing and linkage procedures  

  • By recommending a set of guiding principles for all data linkage activity we will both raise standards and create a clear and consistent approach to data linkage across Scotland.
  • By working with the Information Commissioner’s Office to increase the understanding of the Data Protection Act and other legislation across all those involved in linkage activities we will encourage respect for privacy and proportionate and effective approaches to mitigating privacy risks
  • By encouraging transparency, openness and public involvement in decision making we will increase public understanding about how and why personal data are used for statistical and research purposes, and ensure the public value of research involving linkage methods
  • By co-ordinating and harmonising data access and approval processes across sectors, without adding layers of bureaucracy, we will streamline the establishment and management of data linkage projects

We have an ambition to fully realise the benefits that can be achieved through data-linkage to maximise the value of existing data

  • By enhancing the data standards and statistical capacity we will improve the quality of data that exists and make advances on the evidence base, particularly in terms of a joined-up understanding of how outcomes are achieved, allowing for more informed spending on public services and early interventions that save money in the long run.

 

We will acheive these ambitions through delivering the Data Linkage Framework. The framework is composed of four blocks:

  • The Guiding Principles to assist data controllers and decision makers (e.g. ethics committees, privacy committees, data access panels) take a proportionate approach to managing the risks inherent in any data linkage;
  • A Privacy Advisory and Ethics Committee to advise on data sharing and linkage and associated ethical, legal and social issues;
  • A Data Access and Linking Service to support researchers and data custodians develop legal, ethical and practical linkage projects, provide separated indexing and linking functions for cross-sectoral data, and secure access for analysis; 
  • The Steering Group to oversee the strategic direction of the Linkage Centre and Advisory Committee, ensuring a joined-up approach with other major developments in Scotland. 

All elements of the framework will both facilitate and rely on collaborative working, sharing of best practice and harmonisation of activity across the network of experts and facilities in Scotland.

 

framework

Documents from the consultation process

The consultation on the aims and principles of a Scotland-wide Data Linkage Framework was launched at the ScotStat Conference in March 2012.

Presentations from the ScotStat Conference, March 2012

 

The consultation had two main parts: 

1. A written stakeholder consultation exercise. This was carried out by Scottish Government officials, and ran from March 26 to 15 June. The aim was to elicit views from stakeholder organisations on the aims of a data linkage framework, the benefits and barriers to data linkage activity, and a draft set of Guiding Principles.

The consultation paper is available at http://www.scotland.gov.uk/Publications/2012/03/3260/0

The responses received can be seen at http://www.scotland.gov.uk/Publications/2012/07/7705/0

And the analysis of the responses is at http://www.scotland.gov.uk/Publications/2012/08/3287/0

2. A series of public deliberative events. This work was carried out by Ipsos MORI in partnership with Professor Sarah Cunningham-Burley and Dr Claudia Pagliari from the Centre for Population Health Sciences at the University of Edinburgh.  The overall aim was to explore the acceptability of linking personal data for statistical and research purposes, thereby identifying particular sensitivities and exploring mechanisms for overcoming concerns.

A report of this research is available at  http://www.scotland.gov.uk/Publications/2012/08/9455/0

 

 

Contact details

For further information please contact Catherine Millington, Office of the Chief Statistician and Performance

Catherine.Millington@Scotland.gsi.gov.uk

phone 0131 244 4419

Page updated: Monday, March 25, 2013