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. We are represented on the General Data Protection Regulation implementation group, chaired by the Health Research Authority, developing guidance for health research.

The MRC is 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.

• Using information about people in health research – This practical guidance reflects the current relevant legal framework when using information about people in health research.  It will be revised to reflect the new GDPR, which is expected to come into force on 25 May 2018. However, if you follow the advice in this guide you will be well placed to meet the requirements of GDPR.  This guide is part of the MRC Ethics Series and replaces the 2003 publication Personal Information in Medical Research.
• We are currently working with NHS Digital to update Obtaining data from NHS Digital for health research - a guide for researchers and NHS Digital and Type 2 patient opt-outs.
• Retention framework for research data and records - designed to help MRC funded researchers, and their organisations, make risk proportionate decisions about retention.
• 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.
• Understanding Patient Data - Understanding Patient Data is a public-facing website set up to support better conversations about uses of health information.
• 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
• MRC Research Data and confidentiality e-learning - A free module for all working with health data in research.
• MRC Data and Tissues Toolkit - Guidance on the consent and confidentiality issues of working with personal information and human samples.
• 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.