Supporting informatics research
The MRC Regulatory Support Centre has been working with researchers and regulators to develop the following guidance and training materials for those working with health data, across the UK.
The MRC is working with NHS Digital via The Research Advisory Group. The Research Advisory Group is the ‘intelligent customer’ representing the research community. This strategic partnership will enable researchers to deliver better research quicker through the use of high quality NHS Digital data, and NHS Digital to improve its data and data services whilst demonstrating trustworthiness to the public.
- Obtaining data from NHS Digital for health research – a guide for researchers - Practical guidance on the process for access and the other approvals that may be required.
- NHS Digital and Type 2 patient opt-outs - Produced in conjunction with NHS Digital, we provide clarity on Type 2 patient opt-outs, when they apply and what you might expect from NHS Digital as they implement these.
- Health Data Finder for Research - Partnership between Clinical Practice Research Datalink, NHS Digital, NIHR Health Informatics Collaborative and Public Health England, advertising data sets available for research and providing contact details for access.
- 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 obtaining central NHS data and data from National Records Scotland, amongst 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. All applications are scrutinised 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.