Joined up data for better decisions: A strategy for improving data access and analysis

Section 4: Delivery

The Data Linkage Framework is composed of four blocks, which will be delivered and supported through a set of work streams. The four blocks are:

• 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;
• Information Gateway and Data Linkage 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.

The Guiding Principles

In order to support data custodians, researchers and other stakeholders in taking decisions about safe and effective linkage, the foundation stone of the Framework is a set of Guiding Principles, published at www.scotland.gov.uk/GuidingPrinciplesforDataLinkage.

The principles are a guide for thinking about the kinds of issues in play and for justifying decisions about linkage or sharing. They are not rules, they are not prescriptive and they do not restate the law.

There are three central considerations that the principles aim to assist:

• do the potential public benefits from the research justify the risks to privacy?
• what can be done to mitigate the risks to privacy?
• what can be done to increase the public benefits of data linkage and sharing?

Consideration and proportionate application of the principles should help balance these considerations, increase the public benefits from data usage and mitigate risks to privacy. They should help to promote consistency of decision-making and also to foster a degree of trust in the high levels of protection and transparency that the system delivers.

It is the very nature of principles that they do not specify exactly how they can be met. Rather, principles must be considered and applied in the context of a particular project, with its particular objectives and particular risks. Examples of good practice in specific instances and suggestions for implementation will be collated and shared by the Information Gateway Service (see below).

Network of experts and facilities

Scotland has long been a pioneer in the use of linked health service data for statistical research, and there is well established capacity to use data linkage in evaluating health interventions for the benefit of the population's health. Many excellent data linkage facilities and safe havens for data access operate within Scotland and the Data Linkage Framework aims to encourage and facilitate collaborative working, sharing of best practice and joined-up approaches to resource investment across them all.

The Scottish Longitudinal Study (SLS) has proved successful in linking administrative data with a sample from the 1991, 2001 and soon the 2011 censuses. Having attracted substantial Research Council funding the SLS team is now developing a major intergenerational life course study using civil events data (data on births, marriages and deaths) back to 1855, creating an extremely powerful statistical resource which will put Scotland at the forefront of intergenerational research worldwide. This new dataset will be used in conjunction with existing studies but also as a resource on its own.

Since 2009 The Scottish Health Informatics Programme has developed a vast body of expertise in all aspects of data linkage, from public attitudes through good governance and linkage methodology to researcher training and safe havens. The next phase of SHIP will go further in pursuing cutting-edge research, delivering innovative linkage and analysis of health-related data sets, building research capacity and expertise and providing an interface with industry, practice and policy. This will not only contribute to a Scotland that is Healthier. Because of the SHIP commitment to share expertise, experiences and opportunities widely, it will contribute to all of Scotland's strategic objectives to be Wealthier and Fairer, Safer and Stronger, Smarter and Greener as well.

Privacy Advisory and Ethics Committee

The Privacy Advisory and Ethics Committee will be made-up of people from a range of organisations and sectors with experience and expertise of legal, technical and public acceptability issues from different organisations. It will include lay-representation and will be informed by information and data on the views of the broader public.

An important element of the committee will be strong channels of communication with related bodies across the UK and, in time, internationally. The Committee will have at least one member who also sits on the UK Advisory Council for Access to Administrative Data.

The primary functions of the committee will be to oversee and guide the direction and operations of the Data Sharing and Linking Centre, and to offer advice to data custodians on cross-sectoral linkage applications. The development of this capacity will be taken forward in close discussion with public bodies across Scotland to avoid overlap, additional bureaucracy and to ensure added-value.

There will be no legal or regulatory requirement for committee advice for any linkage to occur, but we aim in the longer term to bring together organisations and to create a cross sectoral committee that has the mandate from the organisations to make recommendations as to whether or not data linkages are conducted, giving advice that is proportionate to the risks involved, such as privacy and reputational risks, and in light of the public benefits that would accrue if the linkage took place. The prototype will be the N-PAC (National Privacy Advisory Committee) being developed for SHIP, itself an extension of the current Privacy Advisory Committee that serves NRS and NSS.

To deliver a Privacy Advisory Committee we will work across the public sector, in particular with the Information Commissioner's Office, to develop more detailed proposals for the operation and management of the Committee. There is no intention to replace or undermine the role of The Information Commissioner's Office or any other regulatory body.

Information Gateway and Data Linkage Service

In the consultation paper we sought views on the functions for a 'National Data Linkage Centre'. Overall there was a high level of support for the proposed functions, but some concern that a "Centre" may serve as a data warehouse.

In light of these concerns we will not develop a "Centre" but we will develop a Data Linkage Service and associated information gateway, or concierge support service.

The Data Linkage Service will provide the following functions:

• Lead development of data linkage IT and expertise, generating capacity for more and better data linkage for research and statistics across Scotland.
• Develop and maintain methods for read-through between different individual referencing systems, and support the development and maintenance of a 'population spine'.
• Provide a linkage service: conducting approved within and cross-sector data linkages where necessary and efficient, delivering improvements on the existing range of services available to potential users of linked data.
• Provide a trusted data-exchange service.
• Provide support and encourage co-ordination across the network of data linkage facilities and safe havens that already exist, with a focus on collaboration in procurement and use of ICT and sharing of developments, good practice and methods for linkage.
• Provide support and guidance on the development of linkable local and national sources in order to enhance the quality of strategically important data resources being shared and linked for statistical research purposes.

The SHIP infrastructure, which includes an indexing service and a 'state of the art' high performance database server and remote safe haven access, will form a crucial element of the technical capacity.

To increase the understanding of the Data Protection Act and other legislation across all those involved in linkage activities, to encourage dialogue between researchers, data custodians and the public about how and why data are used, and to co-ordinate and harmonise data access and approval processes across sectors, we will develop a Information Gateway in tandem with the Linkage service. Again, the Information Gateway will build on existing capacity in Scotland. Its functions will include:

• Provide secretariat and support to the Privacy Advisory Committee.
• Assist researchers through the process of identifying appropriate data sources, establishing data sharing agreements, providing technical, logistical or methodological suggestions for mitigating privacy risks and increasing public value from for statistical and research purposes.
• Lead work to further explore the ethical, legal and social issues related to data linkage, in particular the most appropriate forms of benefit sharing.
• Lead work to further explore public attitudes and raise awareness amongst the public as to how data are and could be used, the risks and the benefits of that.
• Collate and publish examples of good practice examples in the application of the Guiding Principles.
• Work with public bodies across Scotland to co-ordinate and harmonise data access and approval processes.
• Work with the Information Commissioner's Office to provide training and guidance in relation to the Data Protection Act and good practice in data linkage activity.
• Develop and disseminate training materials to raise levels of understanding across the public sector in the legal frameworks governing data access and sharing for research and statistical purposes.

Steering Group

A Steering Group was established in 2011 to guide the development of the Data Linkage Framework and it will continue to meet biannually to guide delivery, including the strategic direction of the Information Gateway and Data Linkage Service and the Privacy and Ethics Committee.

Chaired by Director General: Governance and Communities (Scottish Government), the Steering Group consists of representatives from a range of sectors and agencies many of whom are also on other groups and committees, helping to ensure that this framework is developed harmoniously with other initiatives and policies across Scotland.

The remit of the group is to provide high-level strategic direction for framework development and delivery. It does not consider operational issues of data linkage in detail. We currently have in place a cross-sectoral multi-agency operational working-level group that agrees co-ordination issues and takes forward delivery of the strategy. As the framework is developed working arrangements will evolve.

Membership of the Steering Group and minutes of all meetings are available at http://www.scotland.gov.uk/Topics/Statistics/datalinkageframework/steeringgroup

This framework strategy sets out a long term vision for data linkage in Scotland which will take many years to realise fully. The approach will be iterative, engaging with stakeholders and the public as plans are developed, and joining-up existing linkage programmes and projects to make better use of existing resources.