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 HSCIC changed its name to NHS Digital on the 1st August, we are currently updating our guidance in light of this.
The MRC is also supporting the work of the Office of Life Science Ministerial Industry Strategy Group – Health Data Programme, towards a streamlined data access process across the HSCIC, the Clinical Practice Research Datalink (CPRD), NIHR – Health Informatics Collaborative (NIHR-HIC) and Public Health England (PHE). The guidance provided below reflects current practice and will be regularly reviewed to reflect the current pace of change.
- Obtaining data from the Health and Social Care Information Centre (HSCIC) for health research – a guide for researchers - Practical guidance on the process for access and the other approvals that may be required. The HSCIC is going through a period of rapid change and we will regularly review this guidance.
- HSCIC implement Type 2 patient opt-outs - Produced in conjunction with the HSCIC, we provide clarity on Type 2 patient opt-outs, when they apply and what you might expect from the HSCIC as they implement these.
- Health Data Finder for Research - Partnership between Clinical Practice Research Datalink, Health and Social Care Information Centre, NIHR Health Informatics Collaborative and Public Health England, advertising data sets available for research and providing contact details for access.
- NHS-Higher Education Information Governance Working Group - Helping facilitate higher education and HSCIC 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.