Notes from Data Linkages Operations Oversight Group

NOTES FROM DATA LINKAGES OPERATIONS OVERSIGHT GROUP

MEETING 18TH AUGUST 2011

Feedback from Steering Group meeting of 25th July
The Steering Group was very supportive and enthusiastic about the proposal and agreed that the benefits from data linkage were huge and could play a key role in improving services and saving money across the whole of the public sector. The Group were very keen on the project being pushed ahead as quickly as possible – the focus should be on implementation, not on talking about it forever.
On the issue of the Data Linkage Centre, there was support for a national centre as this would be best able to deliver the step change that is needed and be a centre for excellence in areas like technical expertise. The work on this should be taken forward collaboratively, taking advantage of the range of expertise and knowledge contained within the existing units. An action was identified to discuss the how, when and where of the creation of a jointly owned collaborative governed centre for data linkage.
The Steering Group want more consideration on the issue of public engagement – the concerns of some members of the public to the issue was recognised but it was also recognised that many people believed that this was already been done.
The Steering Group believe that much could be learned from the Scottish Health Informatics Programme (SHIP) and Scottish Longitudinal Survey (SLS) to identify what they can bring to the proposal, develop a wider national framework for data linkage and how to ensure collaborative working.

Individual referencing systems
Anthea presented a very useful draft paper that is already helping get everyone up to speed and share knowledge about individual referencing systems. The paper needs to continue to develop towards a guide to individual referencing systems that will be useful to all, including those knew to data linkage.
The key issues with any referencing system are coverage and maintenance. It was recognised that a single referencing system being introduced was unlikely for a variety of reasons – including public acceptability and finance.
A discussion was held on the main public sector individual referencing systems in Scotland – the Community Health Index, the NHS number, the Citizens Account number, the National Insurance Number, the Scottish Candidate Number. It was recognised that this was not an exhaustive list and the Individual Referencing Sub-Group need to continue to flesh it out more as some details remain to be confirmed.
The issues about over and under counting and comparability between the various referencing systems. A key issue is around the maintenance of any referencing system as creating one simply for data linkage was seen as being unsustainable.
There are a number of issues around the CHI. One is that HM Armed Forces do not all have them (around 50%) and this creates issues in areas where they are based but a decision has been made to allocate them a CHI. Another is that it is linked to GP registrations and some groups can be ‘slow’ in doing this – young men in particular, students and migrant workers. Work has been underway to improve the CHI and the level of duplicated records has now been reduced to less than 1%.
It was pointed out that the data linkage project was not all about the creation of a population spine and many useful linkages can be conducted with individual referencing systems that do not have total population coverage.
For some work there is a desire to be able to make family linkages. In general these can only be inferred from some records through the address or from specific links, like mother and babies. The SLS does have family linkages within it and these extend to dispersed families – 3rd / 4th cousins, etc. DfWP data does have some information on family members related to benefit claimants. There would remain the issue of how to develop and maintain information on household composition and structure.
There was some discussion over the opportunities to look beyond public referencing and data into the private sector. The consensus was that this would raise significant issues of public concern – with focus group work suggesting that the public generally believe that the public sector should share information to improve services but are not happy with sharing data with commercial bodies.
Actions:-

The Individual Referencing group to meet within 1 month to develop a work plan – setting it’s own deadlines to maintain momentum
Anthea to discuss with Muriel arrangements for linking CHI and NHS-CR to test coverage
David Signorini to identify someone within Justice ASD who could assist particularly on details of the justice reference number.
Dette to put Anthea in touch with a contact in DWP who could provide information about NINO
The group would benefit from having a council representative on it to increase the awareness and understanding of what referencing systems councils presently use for dealing with information. This would not necessarily mean attending meetings but being available for virtual meetings, etc.

Existing technology and expertise mapping exercise
Work has been being taken forward to identify the main elements of the nationally available data linkages infrastructure in Scotland.
It was felt that the work could be enhanced to give more detail – on how the present centres function, i.e. how they do linkages, their security measures, the linkage methods used and the technical aspects (hardware and software), usage and accessibility.
Actions:-

The technology sub-group to add further details to the paper, which should begin to form a basis for sharing best practice on the technological elements of data linkage.
This group will also look to develop a web portal where information for the operations organising group can be accessed.

Public consultation
It has been agreed that a formal consultation on a national Analytical Data Linkage Framework will be undertaken. This will be focused on key stakeholders (data guardians and data users) at this stage but will be placed on the consultation website so the public will be able to see and respond to it if they wish – but it will not be directed at them.
It was felt that there may be merit in including the Community Planning Partnerships in the consultation as you may get a different perspective than that which the Caldicott Guardians and Data Protection Officers might have on data linkage.
On the 3rd October, ONS is to launch its consultation on Beyond 2011 – focusing on the needs and priorities for Census of Population type information in the future and the extent to which these require a 2021 Census or can be met from other sources. This consultation will only cover England and Wales.
Consideration is being given to incorporating such work into the public consultation efforts around the data linkage framework – or at least some coordination.
It was agreed that the consultation would not attempt to collect information for Privacy Impact Assessments specifically, but nevertheless consultation responses may be used in PIAs subsequently.
The consultation should be seen as the first step of two, with the 2nd stage being a wider public engagement programme.
The proposal at present is for the consultation to be launched on 6th October and close on 29th December with the report on the consultation by at least the end of March
Actions:-

Sara to circulate draft consultaiton document by 26th August. All comments and suggestions needed by 2 September.

Any other business
MRC/CSO Social and Public Health Sciences Unit has received funding for 5 years to look at the implications and impacts on public health of the benefits system. This could be a possible pathfinder for the data linkage centre idea and the creation of a trusted exchange.
Next steps
In terms of the next steps, these include:-

The meeting involving SHIP, SLS and NRS to discuss the issue of a central data linkage centre;

The meeting between SHIP and SLS on the roles they can play and how to ensure collaborative working.