Seeking Approvals: Central NHS and other data approvals

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Introduction

This station covers which approvals are required to access data held by NHS Digital, the Office for National Statistics (England and Wales) and NHS and other government data held in Scotland and Northern Ireland.  

Accessing data from the NHS Digital - England and Wales
As a result of the Statistics and Registration Service Act 2007, the Health and Social Care Act (2012), the Care Act (2014) (all pieces of legislation are available from the 1st resource below), and a recent NHS Digital review, the process for accessing the above data has changed.  The NHS Digital Data Access Request Service (2nd resource below) can provide data to help researchers with: long term follow-up of participants; demographic and mortality status of patients; list cleaning as well as data linkage/matching, amongst others.

Practical tips on applying to NHS Digital are found in guidance produced by the MRC and NHS Digital (accessed from the 3rd resource).

In some situations, e.g. for mortality data, NHS Digital works with the ONS to provide access. In addition to the standard approvals required to access NHS Digital products (listed in 2nd and 3rd resources), approval to include mortality data must be granted by ONS (see 4th resource below). Data can only be provided via one of 3 gateways:

  1. With explicit participant consent (see wording below)
    "I understand that information held and maintained by the Health and Social Care Information Centre and other central UK NHS bodies may be used to help contact me and provide information about my health status"
  2. If you are working on behalf of the Minister for Health, i.e. your study has Department of Health funding. The following alone do not qualify you for this gateway: MRC funding, NIHR portfolio adoption, non-health department funding such as DEFRA funding;
  3. Approved researcher (see 5th resource below).

Hospital Episode Statistics (HES)
NHS Digital publish standard analyses of Hospital Episode Statistics (HES) and high-level national figures from Patient Reported Outcome Measures (PROMs) on their website (please see 6th resource below).

Information Governance Toolkit
Applications for data held by NHS Digital requires the applicant to provide assurance that good Information Governance practices are in place. This involves completion of the NHS Information Governance Toolkit (7th resource below).

The higher education sector and NHS Digital have been working together to increase mutual sector understanding, and provide a community for Information Governance professionals. This community, the NHS-Higher Education Information Governance Working Group, liaises directly with NHS Digital about the development of the Information Governance Toolkit and proposals for change.  More information about the working group can be found in the list of informatics resources at number 3 below.

Section 251 support
Access to NHS patient data in England and Wales without consent may require Section 251 support via the Confidentiality Advisory Group (CAG) of the Health Research Authority (HRA) (8th resource). Please see Section 251 approval for more details.

Wales
In Wales, obtaining research access to central NHS data and data from multiple sources requires application to the Secure Anonymised Information Linkage (SAIL system, 9th resource).  All applications are scrutinised by the independent Information Governance Review Panel.

Scotland
In Scotland, for access to patient information held within one NHS board in Scotland, advice should be sought from the individual Caldicott Guardian. Access to patient information in more than one NHS Board in Scotland requires application to the Public Benefits and Privacy Panel (10th resource).  This panel is made up of what were previously three separate committees, the Community Health Index Advisory Group (CHIAG), National Caldicott Guardians and the Privacy Advisory Committee. Applications to this new panel are made via the electronic Data Research and Innovation Service (eDRIS) (11th resource below). This service provides a single entry point for publicly held data. Each application is assigned an eDRIS Research Coordinator who can provide advice on study design and study feasibility. See Central NHS & Government Data for details of the types of data available.

Applications to Public Benefit and Privacy Panel should be completed and submitted on a Public Benefit and Privacy application form (see 12th resource).  Guidance on completing the form is available from their website (12th resource).  You are strongly advised to seek help from an eDRIS Research Coordinator prior to completing the form. Submissions must be made via your assigned eDRIS research coordinator.

Northern Ireland
The Privacy Advisory Committee (Northern Ireland) was established in 2006 to oversee the implementation of recommendations agreed by the Minister on Protecting Personal Information. The recommendations included the development of a comprehensive Code of Practice on Confidentiality (13th resource) designed to help healthcare staff make the right decisions about protecting and disclosing patient information.

For more information please see the HSC Privacy Advisory Committee (Northern Ireland) website (see 14th resource below) or contact Professor Roy McClelland at r.j.mcclelland@qub.ac.uk.

Resources