Supporting research using health data

The MRC Regulatory Support Centre works with researchers and regulators to develop guidance and training materials for those working with health data, across the UK (see also GDPR resources).

We are working with NHS Digital via the Research Advisory Group (the ‘intelligent customer’ representing the research community). This strategic partnership will enable researchers to deliver research quicker through the use of NHS Digital data, and NHS Digital to improve its data and services whilst demonstrating trustworthiness to the public.

• England's national patient opt-out only applies to research with Section 251 support from HRA CAG - Patient opt-outs won’t apply to the vast majority of research (e.g. where you have consent).  NHS Digital will apply patient opt-outs to some data that they provide to you (i.e. where you have Section 251 support to receive confidential patient information from them without consent; or where you will receive anonymised data from NHS Digital and Section 251 support is needed to complete bespoke linkage or anonymisation). In these situations NHS Digital will apply opt-outs and your dataset will be incomplete.  By March 2020, all health and adult social care organisations in England will be applying patient opt-outs to data flows with Section 251 support.
• Health data access tool - We will publish a new tool to help clarify how you can access health data from central sources later in the year.
• Using information about people in health research – This practical guidance has had a minor update. A more comprehensive update to reflect the requirements of GDPR and new Data Protection Act 2018 is planned later this year. In the meantime our GDPR resources provide up to date guidance on the new data protection law in the UK. This guide is part of the MRC Ethics Series and replaces the 2003 publication Personal Information in Medical Research.
• Retention framework for research data and records (PDF, 390KB) - designed to help MRC funded researchers, and their organisations, make risk proportionate decisions about retention.
• Understanding Patient Data - Understanding Patient Data is a public-facing website set up to support better conversations about uses of health information.
• Health Data Finder for Research - Partnership between Clinical Practice Research Datalink, NHS Digital, NIHR Health Informatics Collaborative and Public Health England, which advertise data sets available for research.
• NHS-Higher Education Information Governance Working Group - Helping facilitate higher education and NHS Digital mutual sector understanding, and providing a community for Information Governance professionals.
• Electronic Data Research and Innovation Service (eDRIS) in Scotland is the entry point for access to central NHS data, data from National Records Scotland and others. The Public Benefits and Privacy Panel review all applications made via eDRIS.
• Secure Anonymised Information Linkage (SAIL system) in Wales provides research access to central NHS data and data from multiple sources.  Applications are reviewed by the independent Information Governance Review Panel.
• HRA/MRC Reducing the disclosure of confidential patient information - Guidance for HRA Confidentiality Advisory Group applicants and potential applicants
• HRA/MRC Consent and patient information sheet preparation guidance
• HRA/MRC decision tool Do I need NHS REC approval? - Determines whether there is a legal or NHS requirement for NHS REC review based on how you answer some key questions. University REC review can be obtained where needed.