The UK’s Health and Social Care Information Centre has published a register of approved data releases as part of its drive towards greater transparency and building public trust.
It covers data releases approved by the HSCIC from the point it was established on 1 April 2013 to 31 December 2013. This includes agreements originally approved by the predecessor organisation, the NHS Information Centre, but renewed between 1 April and 31 December last year.
Publication of the register follows a commitment by the HSCIC board to ensure details of all approved data releases are published, and the register will now be updated on a quarterly basis.
HSCIC chair Kingsley Manning said: “By placing this register before the public the HSCIC is taking an important step towards the full transparency needed to help the public gain confidence in the services we provide. We are absolutely committed to encouraging scrutiny of our work and we welcome feedback on today’s register, which is important towards informing the structure and clarity of future publications and indeed to the organisation as it develops. This is about ensuring citizens and patients are clear about how data is used to improve the health and social care received by them directly and by communities as a whole.”
The new register lists each organisation, the type of data released, the legal basis for release and the purpose for which the data was provided.
In total 459 data releases relating to 160 organisations are listed and include: 347 releases of pseudonymised data and 75 releases of identifiable data, all with an appropriate legal basis for sharing in place; 104 health and social care organisations (such as NHS trusts) and bodies such as universities and charities, and 56 private-sector organisations, which provide services to the healthcare system.
The government further intends to strengthen legislation around how data is shared – which has gained much media attention in the wake of the care.data debacle. HSCIC is currently reviewing its data sharing procedures and processes, including applications for new or renewed data agreements.
By law the HSCIC is obliged to disseminate the data it collects in order to help drive improvements to the health and social care system, while safeguarding patient confidentiality. The majority of this data is published in aggregated and anonymised form, which supports the Open Data initiative and the drive for transparency. The HSCIC also uses this data to publish more than 200 public reports on health and social care.
Where the HSCIC releases data that is not fully anonymised and there is a legal basis to share outside of the HSCIC, there must be a clear data agreement with the organisation receiving the data to say what they can and cannot do with that information.
Last month the board also announced a separate review of data releases, which will cover those approved by the predecessor organisation prior to April 2013. This review is currently underway and will made available to the HSCIC board at the end of April 2014, to be discussed at its meeting on 15 May 2014, prior to a publication at the end of May 20144.
A proposed amendment to the Care Bill which is currently before Parliament is for the Confidentiality Advisory Group (CAG) to advise the HSCIC on data releases. The HSCIC welcomes this proposal and has identified a number of areas of the register where it will seek guidance from CAG and any other such bodies established by Parliament, including on the use of data by commercial organisations.
The register and further information about what it contains is at: www.hscic.gov.uk/dataregister