Data Linkage Framework Programme Board - 5 November 2013
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Data Sharing and Linkage Service
Pathfinder Projects Update - For Information
Purpose
This paper was first provided to the board in August 2013 and has been updated with
information on the principal investigators / project leads and progress.
Background
As part of the Data Linkage Framework a fund has been established to support projects
that will deliver its aims by tackling the challenges that prevent effective and efficient data
linkages from occurring. These challenges are
1. Uncertainty about the legalities and public acceptability of data sharing and linkage.
2. Incomplete data, or data that cannot be linked.
3. Limited capacity for secure exchange and access to data.
4. Limited capacity of public sector organisations to analyse and make use of linked
data
Project Updates
 An event was held on 7th October where each of the main projects was presented to
a group of analysts and other staff from Scottish Government, NRS, NSS and other
partner organisations. These presentations will be prepared for wider publication.
 Each of the scoping projects has now produced a draft report. These will be finalised
and then shared to stimulate ideas for potential new projects in these areas
 The young people scoping project has been subsumed into a wider project being
carried out in Scottish Government around the strategic use of data in this field and
no longer requires funding
 Discussions with PAC around the implications of their feedback on the privacy
implications of this project are ongoing
 A new indexer has been recruited in NRS and will aim to take forward linkage on the
1947 mental survey as an early priority
Selection Process
All projects submit an application describing the proposed project, setting out the
challenges to be addressed, the project methodology, the timeline, funding requirements
etc. The proforma is attached in Annexe A.
Each project is considered by a panel consisting of the Chief Statistician, Chief Executive of
NRS and the Head of ISD. In most cases approval of projects involved a period of
negotiation between the researchers and the approval panel to come to an agreed project.
A formal procurement process was then completed through NRS to deliver the funding with
contract management provided by the DSLS team.
All projects have gone through this process. The total funds committed to pathfinders
across three years is £240,000.
Advertising of the opportunity for this funding has been relatively informal through exiting
networks. All bids are considered by the selection panel and each is considered on its
individual merits. No set budget has been ring-fenced for additional projects to be delivered
so there is no maximum or minimum the funding that must be allocated in a year. We are
committed to considering funding projects up to April 2015.
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Projects
Project: NHS Greater Glasgow and Clyde Population Counts
Aim: To enable a better understanding of the differences in population counts produced by
different sources for Glasgow City Council and NHS Greater Glasgow and Clyde
Project Lead / Principal Investigator: Kirsty MacLachlan NRS
Objectives:

to provide a better understanding of the differences between population
estimates in Scotland calculated by NRS (the Census and the Mid-YearEstimates) and estimates derived from administrative data sources, such as the
CHI, NHSCR, Local Authority (LA) data, etc.

to review and document available data sources and assess whether the data
quality of administrative data sources can be improved

to establish the suitability and accuracy of relevant data sources and
determine whether it is possible to use them to contribute to population statistics

to assess whether the population of NHS service users in GG&C Health
Board area is significantly different to the population estimates produced by NRS,
particularly given the significance of the MYE in determining the allocation of
NHS resources

to identify any potential disparities in the population estimates for particular
geographical areas or subsets of the population, with the intention of
documenting, explaining and assessing the implications of these differences
where possible.

To report on any barriers to data sharing that are identified and to document
the steps taken to reduce or alleviate these barriers. This will assist the work that
is taking place in the Beyond 2011 programme and the Data Sharing & Linkage
Service (DSLS).
Costs: £70,000 (to provide staff in NRS) plus potential support in kind for linkage when
DSLS staff in place
Outcomes:
 to create an inventory of all relevant administrative data sources, including an
assessment of the potential contribution each dataset can make to the project
objectives.

to produce detailed reports which describe and analyse the differences
between the various datasets to which access is granted, including summary
tables of population estimates from different sources.

to create a set of agreed population records which enable a reliable and
accurate population estimate to be derived.

to report and present any recommendations concerning the future allocation
of NHS funding to TAGRA based on the evidence found in the analysis.
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to report on any barriers to data sharing that are identified and to document
the steps taken to reduce or alleviate these barriers and to inform the
development of the population spine This will assist the work that is taking
place in the Beyond 2011 programme and the Data Sharing & Linkage
Service (DSLS).
Learning Points
Data quality The project is particularly focussed on the quality of data used to produce full
population statistics and will help to address data quality and completeness issues
associated with this type of data. Ensuring the data quality improvement work can be
generally applied across local authorities and health boards is an important factor being
considered. For example the project has developed our understanding of the challenges
associated with identifying the whereabouts of hard to count groups such as young men not
in regular contact with health or authority services
Data sharing This project is developing our understanding on all the challenges by
investigating sharing and linking issues relating to data held by the council, the health
board, NRS and ISD as well as other potential sources of population data.
Spine The project is informing the development of the population spine to be used both in
Beyond 2011 and to facilitate linking in the DSLS
Technicalities of linking and sharing The project gives an opportunity to test and
develop our technical approaches to file exchange, linkage etc
Timescales
Key Milestones
By Jan 2014 – Source investigation phase complete, aiming to have data access in place
By March 2014 – Inventory of data sources completed
By April 2014 – Report on Barriers encountered to sharing
By Jan 2015 – Expansion to support national level work for B2011
By Jan 2015 – Further record level linkage in support of B2011 complete
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Project: Children vulnerable to maltreatment and/or neglect: scoping the capacity of the
Scottish Longitudinal Survey (SLS) to address research questions of interest.
Project Lead / Principal Investigator: Janice McGhee, Edinburgh University
Aims:
 To scope whether it is possible to identify vulnerable children using the SLS through
mapping relevant information within its linked administrative and health-related data.
 To explore whether data in the SLS would be useful and/or possible in creating task
specific administrative data linkage projects addressing research questions relevant
to these children
 To explore, given privacy and data issues, whether the SLS may be a suitable
vehicle to conduct longitudinal research on children who potentially may be
vulnerable to maltreatment and/or neglect in Scotland.
Objectives:
 To identify and create indicators from relevant variables/field within SLS and linked
administrative and health-related data that could potentially identify populations of
children who may be vulnerable to maltreatment and neglect. This would include
discussion of relevant derived variables (such as key hospital admission codes).

To identify and create indicators from relevant variables/field within SLS and linked
administrative and health-related data that may have the capacity to answer specific
questions about children who potentially may be vulnerable to neglect and abuse.

To gather information on frequencies, for example, the number of parents in
treatment for drug misuse who also have children.

To identify appropriate sample(s) from the SLS. Taking account of privacy issues
this may include identifying vulnerable children born to SLS members who are the
parents, or SLS members who are children and linking in information on their
mother.

After identifying the sample(s), to explore whether there would be sufficient numbers
for useful longitudinal analysis?

To explore technically as to whether either a SLS member who is the child can have
other family records linked (health data about their parents), in order to provide
informative longitudinal data about vulnerable children and their parents. For
example, are the datasets CHI seeded, or hold other appropriate identifiers, in order
to have required information for the linkage to the SLS.

Further, to explore ethical issues in consultation with the NHS/ISD Privacy Advisory
Committee (PAC) relevant to linkage beyond the SLS member, either as the child or
parent, since this will be required to track development and vulnerability

To identify new linkages from current health and social care datasets that would be
necessary to, or would enhance, the identification and tracking of these vulnerable
children.
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Costs: £25,000
Outcomes:
The primary outcome would be a working paper scoping the capacity of the Scottish
Longitudinal Survey and associated health and education related databases to identify
children who may potentially be vulnerable to maltreatment and/or neglect. This would
include:




Discussion of practical, ethical and technical issues in linking data;
Exploration of the possibility of small scale linkages that would be informative about
specific aspects of children’s well-being, for example, child members who are in
treatment for substance misuse and who have children;
Potential research questions that could be addressed; and
Whether there is likely to be sufficient numbers of relevant children for any
longitudinal analysis.
The secondary outcome would be a paper to discuss the implications arising from the
identified practical, ethical and technical issues in the context of the proposed National
Data Linkage Centre and PAC regime.
Learning Points
Consent Explore issues relating to consent where data on another un-consented
individual (e.g. a parent) is required in order to study an individual where consent does
exist (e.g. the child)
Issue associated with very small population Inform us on how to use data linkage to
create longitudinal research to facilitate the study of very small population groups (such as
vulnerable children) and inform us on any particular privacy issues due to the small
populations
Read Through Informing the work on maintaining the ability to link between admin systems
for this purpose
Approvals Will work through existing approval processes as well as using new streamlined
processes gathering valuable experience and insights into the mechanisms around this to
inform the programme
NB This project has recently received feedback from its PAC application. It has identified a
number of significant issues relating the privacy of the individuals involved. Given the
vulnerable nature of the individuals involved the PAC felt there was an obligation to act if
the researcher identified a potential for harm to an individual (even if this was a deidentified record) and that this would potentially result in a breach of privacy.
Researchers at Edinburgh University and the SLS are currently clarifying and responding to
the PAC feedback and colleagues from Scottish Government and NRS will also contribute
to understanding the PAC response and developing a way forward to deal with the
important issues that have been identified for this project. This may result in a change in
the timeline and scope of this project but it is providing exceptionally valuable learning
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around the nature of analysis of vulnerable individuals and small populations.
25/10/13 – Discussions with PAC are ongoing but have not yet been concluded to allow the
project to be replanned
Timescales
Key Milestones
- Initiation - December 2012
- Review of Variables - February 2013
- Completion of PAC application - March 2013
- Completion of analysis report – October 2014
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Project: Looked After Children Data / Dental Records
Project Lead / Principal Investigator: David Conway, University of Glasgow
Aims:
A data linkage study which provides access to population wide data from NHS dental
and local authority sources. These will provide greater scope for comparison between
young people who are looked after by the state and their peers. Finally we aim to set
out the governance and technical protocols which can be used in future projects which
to link the similar data sets
Objectives:

To conduct a cross-sectoral data linkage project focusing on linking and analysing the
NHS dental service and oral health data collated in the Information Services Division
(ISD) of National Services Scotland (NSS) to the national data on looked after children
collected by local authorities and collated by the Scottish Government. This will include
a comparison of oral health and access to dental services among looked after children
with the wider child health population and assess any variation by geographic location,
age, sex, and category of looked after children.

To provide guidance which will facilitate data linkage in the longer-term and thus the
sustainability of the project.

To provide results to inform the development of care pathways for these children within
the Childsmile national oral health improvement programme. This will include producing
a report for the Childsmile Board and Chief Dental Officer, Scottish Government to
inform the development of care pathways into dental services for looked after children
Costs: £110,000
Outcomes:
1) Produce a protocol for cross-sectoral record-linkage involving health and Looked After
Children data. This will include detailing governance processes in relation to approval for
data access, linkage and analysis. It will also include outlining a mechanism for maintaining
the potential for future linkage without the maintenance of a large merged database (read
through)
2) Produce a detailed metadata report of linked dataset including variable descriptors and
definitions, and data quality, completeness, accuracy (with detailed focus on LAC data).
3) Produce a final research report on the findings of the data linkage detailed
epidemiological analysis and draft papers for peer reviewed journals. These publications
will include explanations for these findings, demonstrate the utility of this cross-sectoral
linkage, and explore the need for developing potential interventions and care-pathways for
these children. Implications for general health outcomes and services will also be explored
Learning Points
Approvals and Sharing: Our study will continue to explore the information governance
and approval processes for cross-sectoral linkage building on learning from the Scottish
Informatics Programme (SHIP) and on the first ScotXed and health linkage of SCN and CHI
numbers. Permission will be sought from the ScotXed and LAC data access controllers /
committees. NHS ethics approval is unlikely to be required for the data linkage, but a NHS
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Ethics Committee scientific officer will be consulted for advice.
Data Quality: Our project will also include assessment of quality and completeness of the
LAC dataset.
Read Through: The project will be an exemplar for read through and seek to establish the
principle and process of read through by establishing this between health and education
Cross sectoral working: We believe our collaboration of multi-disciplinary academics with
colleagues in ISD, and Scottish Government with strong policy and front-line service links,
will deliver the additional capacity to analyse and support the use of linked data. The
techniques developed by our project are likely apply to other preventive health services for
children who are looked after by the state including for example, immunisation
programmes, sexual health initiatives and other interventions which seek to improve health
and wellbeing.
End to End Linkage Project: This project allows us to test from beginning to end the
proposed processes being developed to deliver data linkage from initiation, approvals,
sharing, linkage, analysis and disclosure control.
Contribution to Official Statistics: It is intended that the linkage between LAC and health
will ultimately contribute to LAC national statistics reporting so this project will help us to
identify particular issues relating to production of national statistics that can be more widely
applied.
Timescales
Key Milestones

Project Initiation - January 2013

Data Sharing Agreement for LAC data - March 2013

Source Metadata Report - November 2013

All remaining health approvals and pathway protocol - November 2013

Final generic read through process - January 2014

Interim Linking and Analysis Report - February 2014

Final Linking and Analysis Report - March 2014

Linked Metadata Report - June 2014

Final Research Report - September 2014
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Project: Data Quality Improvement in Scottish Environmental Protection Agency (SEPA)
Project Lead / Principal Investigator: Duncan Taylor / Steven Fox (SEPA)
Aims: To start rolling out within a test setting ProcXed, the ScotXed data validation tool, to
demonstrate that it can be delivered outwith the existing Scottish Government limitation to
deliver improved data quality in partner organisations
Objectives:

To demonstrate the de-coupled ProcXed tool can be used externally in test and then in
the live installation

To test this within a near live environment

To understand user issues associated with using the tool externally

To understand challenges and opportunities associated with this approach

To add additional users organisations based on the experience with SEPA
Costs: No cash cost but in kind support being provided by Scotxed
Outcomes:
 SEPA to use ProcXed to collect data from a range of partners to feed into their
Aquaculture project using an automated upload, validation and data transfer process
to move the data into their backend systems to support reporting etc.
 To demonstrate the usefulness of the tool in a live data collection / improvement
environment by delivery of case studies describing the process
 Improved data quality / collection in partner organisations
 To open up potential access to new data sources
Learning Points
Data Quality To help understand the issues around improving data quality within a live
collection environment
Service Provision To help understand the challenges and opportunities associated with
providing a service to partner organisations around data quality improvement and to
provide technical feedback on the provision of the validation tool.
NB Following on from this project ScotXed are also now working with Building Standards –
this is a collection that will go live in early 2014 and have gone live with data collection on
the first benefit to be administered in Scotland – Scottish Welfare Fund. Lessons learned
from this project have contributed to successful deliver of these follow on projects and the
improved quality data already being collected
Timescales
Key Milestones


Test set up established and SLA agreed - February 2013
Data Collections started - March 2013
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


Final technical set up work completed - August 2013
Live processes started - September 2013
Aquaculture website live – October 2013
Evaluation complete – November 2013
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Project: Cross-Sectoral Scoping Opportunities and Challenges
Aims: To start focussing on specific challenges and opportunities associated with linking of
data between specific sectors
Project Lead / Principal Investigator: Health – Jill Pell, University of Glasgow;
Environment – Marian Scott, University of Glasgow; Genetics – Pamela Linkstead,
Generation Scotland; Young People – Carrie Graham, Scottish Government
Objectives:
 Develop our network of researchers interested in data linkage

For a number of important sectors identify;
o any current sector level key policy drivers or challenges that could be better
addressed with improved evidence or research using linked data and any key /
priority opportunities to link datasets to help deliver this improved evidence from
the perspective of those within the sector
o The challenges preventing this from happening (eg legal, data quality etc)
o Any current data linkage centres, infrastructure or resource within the sector

At the dataset level identify;
o Important datasets within the sector including a brief summary explanation of
what is held in the dataset, coverage eg national or for a specific location, type of
data eg survey or census data, administrative data, purpose of collection eg for
statistics, for administration etc, and how often the data is collected or updated
eg annual collection, constantly changing admin system
o Specific useful linkages that could be made to this data set
o Benefits of making this linkage
o Barriers to creating this linkage
Costs: £30,000 (across four partners - Environment, Health, Genetics and Young People)
Outcomes:
 Increase our network of interested researchers to be further developed
 Meta data on each of the identified sectors
 Priority projects within and between sectors
 Increase visibility and recognition of the DLF
 Initial projects to be delivered through DSLS
Learning Points
Challenges and Opportunities Increase our knowledge by gathering detailed information
on the range of challenges and opportunities presenting within specific sectors, increasing
the detail of our knowledge on specifics within sectors
Expectation of Researchers Increase our knowledge of what specific researchers expect
to be able to deliver in terms of linked data and what they expect of a linkage service being
developed to deliver this
Prioritisation of Linkage Can we start to identify a key strategic core of datasets that will
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open up linkage across a number of sectors and so should be prioritised for linkage
Timescales
Key Milestones




Health Scoping August 2013
Environmental Work Completed September 2013
Genetics Work Completed October 2013
Young People Completed January 2014
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Project: 1947 Mental Survey Linkage
Project Lead / Principal Investigator: Ian Deary, Edinburgh University
Aims: To develop a new longitudinal linkage resource based on the 1947 national survey
of the mental ability of 11 year olds by linking to the NHSCR to allow records to be linked
up to the present and back to the 1939 population register
Objectives:

To identify broader issues and opportunities for longitudinal research and opportunities
to link to the 1947 data

To link the 1947, 1939 and NHSCR

To agree a storage strategy for this new resource
Costs: £10,000
Outcomes:
 Linked data set matching all elements of the 1947 data (main population plus
detailed sub-samples) to NHSCR
 Scoping report on longitudinal data
 Scoping report on linking to the 1947 data
 Agreed storage solution for this dataset
Learning Points
Longitudinal Data Longitudinal data projects are long term and so require data storage
solutions not required more broadly as linked data projects within the framework will not be
maintained beyond the end of the particular project
Technicalities of Linkage This project will be used as a training tool for new indexing staff
Permissions and Approvals This project will require PAC approval and will also help
develop our understanding of consent etc around longitudinal data
Capacity This project has been used to inform assumption on technical capacity required
to deliver linkage projects
Timescales
Key Milestones




Initiation - May 13
General Scoping paper – October 13
Data linkage work complete - May 14
Storage solution in place – May 14
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Annex A: DATA LINKAGE FRAMEWORK FUNDING BID TEMPLATE
Funding is available until April 2015 to support projects that will help deliver the aims of the
Scotland-wide Data Linkage Framework for statistical and research purposes by tackling
the challenges that prevent more effective and efficient data linkages from occurring in
Scotland. These challenges are:
o Uncertainty about the legalities and public acceptability of data sharing and linkage.
o Incomplete data, or data that cannot be linked.
o Limited capacity for secure exchange and access to data.
o Limited capacity of public sector organisations to analyse and make use of linked
data.
For further information on the framework and a fuller explanation of the challenges see
http://www.scotland.gov.uk/Topics/Statistics/datalinkageframework
Funding of up to £250,000 is available. There is no minimum bid.
Funding will only be provided to projects that offer good value for money in tackling at least
one recognised challenge to effective data linkage. Projects that will have a long-term
impact on the capacity for data linkage in Scotland will be favoured. Please note that this
may include projects that involve data linkage directly if they can be shown to provide proof
of concept or pave the way for further development, but projects do not have to involve
data linkage directly. For example, projects to consider legislative or ethical issues, develop
analytical capacity for use of already linked data, or improvements to data collection
systems to allow for future data linkage will all be considered.
Projects that can synergise effectively with other elements of the data linkage programme
plan will be favoured, as will projects that involve or may support development of crosssectoral linkages (e.g. health-justice-housing or education-environment, rather than
linkages within a sector).
Bids will be assessed on the extent to which they offer value for money in tackling
the challenges that prevent more effective and efficient data linkages from occurring
in Scotland.
There is no annual deadline for bids, but early bids or early indication of interest would be
very much appreciated.
To discuss potential bids at any stage please contact Gerry Donnelly 0131 314 4312,
gerald.donnelly@scotland.gsi.gov.uk . We will be happy to work with you in developing
your proposal and aligning it with wider framework developments if feasible and
appropriate.
As a rough guide, no answer should be more than 500 words. No minimum. Further detail
will be requested if necessary, and a full research specification and/or a meeting to discuss
details may be required subsequent to this initial bid.
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1. Contact name, organisation, phone number, email address
2. Brief overview of rationale, aim and objectives of the project
 To enable a better understanding of the differences between population counts in the
different data sources (Community Health Index (CHI), NHS Central Register (NHSCR),
Census, Council data etc) for NHS GGC and Glasgow Council.
3. Which challenge(s) to better data linkage in Scotland will this project help to tackle
(check box(es))
Uncertainty about the legalities and public acceptability of data sharing and
linkage
Incomplete data, or data that cannot be linked
Limited capacity for secure exchange and access to data
Limited capacity of public sector organisations to analyse and make use of
linked data
Briefly explain how the project will tackle this challenge (if not already covered in question
2).
3. Which National Outcome(s) will the project contribute to?
4. Proposed methodology (if the project is to link data, include which datasets will be
used, information about if/when/how ethical and access permissions will be sought, and
pilot work)
5. Funding required and top level breakdown of costs (e.g. year, staff, consultancy,
infrastructure)
6. Outline of project timetable (including key milestones)
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7. Outline key deliverables (outputs)
8. Briefly outline main risks, their likelihood and impact and how they will be
mitigated
9. Explain if, how and when outputs, insights and lessons learned from this project
will be shared with others
10. If this project fits with any related programmes, existing or planned funding
streams, please explain how