Further supplementary written evidence submitted by Health and Social Care Information Centre (CDD0007)
Thank you for your letter of 16th March to Kingsley Manning concerning the General Practice Extraction Service Independent Advisory Group (GPES IAG) in which you ask about the rationale and process for changes that HSCIC is proposing. I am writing to you in Kingsley's absence as the Chief Executive of HSCIC.
I have set out below why we believe these changes are necessary, and how we plan to implement this without compromising the independent oversight of data collections, extractions and dissemination.
The overall purpose of the proposed changes is to eliminate duplication of processes for managing data collections and disseminations. It is very important that the public are able to fully understand and gain information about these activities easily. For this to be possible, these processes need to be simpler to understand.
The GPES IAG was originally set up to manage requests for data derived from GP data extractions, using a particular IT system. Other data requests are currently overseen by a separate group, the independent Data Access Advisory Group (DAAG).
Our proposal is to combine these two functions into one new committee, chaired by a clinician, and give the new committee a name that makes clear its purpose to protect and guard the public interest in data dissemination. (The working title for this group is the Data Dissemination Advisory Group, or DDAG, but this title will be agreed as part of a planned consultation exercise). Background information on both existing groups is set out in more detail in the attached Appendix.
Consolidating the two existing processes into one combined approach will also simplify this for the customers who use this data.
We will be consulting with the public on the membership and remit of this new committee following the general election in May. The current proposal includes:
An independent Chair, ratified by the National Data Guardian
Nine members, six of whom are independent, three from the HSCIC
Lay members to include people with ethical and legal backgrounds
The advice of the new committee will be subject to Confidentiality Advisory Group (CAG) advice, when the CAG regulations are implemented, currently expected this October
The six independent members proposed for the new committee will not represent their organisation, professional body or any other group. We expect these individuals to be drawn from a range of backgrounds to ensure a broad spectrum of knowledge and expertise, reflecting the complexities of the health and care system. The HSCIC members will contribute the subject matter expertise and will not have an active part in the approval process.
The Standardisation Committee for Care Information (SCCI) committee, mentioned in your letter, is the group which agrees what data collections should be maintained or introduced. It is a sub-committee of the National Information Board and independent of the HSCIC. It has:
An independent chair
Four clinical members, nominated by the Professional Records Standards Body
Other arms-length body, industry and Health Research Authority representatives
An independent standards assurance service
A duty to consult over new collections.
Again I have provided more detail on the SCCI committee in the Appendix.
The SCCI committee, in its scrutiny of collections and data flows in to the HSCIC, will need to work closely with the new committee. Both groups, and their responsibilities, are subject to the scrutiny of the National Data Guardian.
I trust this overview provides the reassurance that you, and other members of the Health Select Committee, require that these changes are important to help simplify existing processes and therefore improve openness and transparency in terms of data dissemination and use, whilst maintaining the integrity of the independent oversight already in place. I also hope that I have clarified the HSCIC commitment to public consultation and the over-sight of the National Data Guardian.
I am happy to discuss this further in person.
Andy Williams
Chief Executive
Appendix
GP Extraction Service Independent Advisory Group (GPES IAG)
The GPES Independent Advisory Group was established in 2012. It is an advisory group set under the auspices of the NHS Information Centre and now operated by the HSCIC. It was established to provide advice to the HSCIC on proposed customer use of the GPES system and in particular to provide oversight/assurance to GPs that data for which they were data controllers was being used in an acceptable manner, delivering benefits for patients whilst protecting patient confidentiality and privacy. There are a number of GPs and retired GPs who are members of this group. Like the Data Access Advisory Group (see below) it is an advisory group and not a decision taking body.
Data Access Advisory Group (DAAG)
This is an internal but independent group hosted by the HSCIC to provide independent assurance/oversight over the organisation's dissemination of identifiable data. It was originally established in 1996 as the Security and Confidentiality Group (SCAG). Its remit was to advise on matters relating to security and confidentiality of data passing through or held by the NHS-Wide Clearing Service, which included HES data. Membership consisted of a range of health representatives e.g. surgeons, GPs, a Trust Director of Information Services. In 2008 the SCAG was replaced by the Database Monitoring sub-Group (DMsG). This was a sub-committee of the (now disbanded) National Information Governance Board and structurally separate and independent from the NHS Information Centre. The DMsG considered applications made to the Information Centre for extracts of HES data containing sensitive data items, where potential identification from these items may cause harm or distress to an individual. This group was replaced by the DAAG in 2010.
The current group has a wider remit than its predecessor as it looks at the implications of data requests where consent has been relied on and also data requests which have s251 support. Within the last year there have been some significant changes to both group membership and the way the group operates. The DAAG makes recommendations on applications to the HSCIC Executive Director acting as Senior Information Responsible Owner (SIRO). It is purely an advisory group, with the final decision on whether or not to provide information being taken by the HSCIC's SIRO on behalf of the Board.
Standardisation Committee for Care Information (SCCI)
This is a sub-committee of the National Information Board (NIB). The members of the NIB who can direct or make a mandatory request of HSCIC to collect data, and/or who can approve information standards, or who have primary legislation to collect data, work together within a single structure and operating framework to recommend approval of information standards and collections, which are a special type of information standard.
The SCCI committee receives the documentation to support the collection, and an independent critique of that collection provided by the Independent Standards Assurance Service. The SCCI committee replaced the Information Standards Board which operated between 2000 and 2014. The remit of the SCCI committee included the changes necessary and sufficient to support the legislative changes set out in the Health and Social Care Act 2012, which includes the requirement to consult.
26 March 2015