The LLR-DfR dataset is securely managed by the non-profit Leicester Health Informatics Service (LHIS). They will provide customised portions of the data for approved research, for a minimal fee, with this process being facilitated by the research group of Professor Anthony Brookes at the University of Leicester. This team also provides an online tool and support service via which the dataset can be initially profiled to evaluate its suitability for use in addressing specific research questions.
The LLR-DfR dataset comprises a pool of primary care records from the 1920’s onwards, approved for research use by 30 donor practices. It includes records on a total of >250,000 individuals, and comprises information regarding: Patient visits and outcomes; and Patient medication and immunisation history (including type of drug, dosage, means of administration and repeats). Data are encoded with SR and SNOMED codes for patient medical history, and IDMultiLex and SR coding for medication and immunisations. Personal, identifiable and sensitive data elements are not available for release to researchers.
The online query tool for profiling LLR-DfR is currently only available for use by University of Leicester researchers (wider access will be arranged in the future). Other researchers should reach out via the contact options below to receive help in profiling the dataset before initiating an access request.
Access Process
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Initial Preparation:
- Get advice from your local Research Ethics Governance and Integrity (REGI) advisors.
- Seek conditional approval for your research idea from the LLR-DfR Controller.
- Consult your local Information Assurance Services and research computing team, to determine a suitable location for data storage/use.
- Complete whatever data risk assessment process is required by your organisation.
- Submit your proposal into your local systems for ethics, sponsorship (if required), and other necessary approvals.
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Once approvals are given:
- Create and agree a Data Sharing Agreement with LHIS, to specify responsibilities, payment, and data export (e.g., data elements, filtration criteria, SNOMED/READ Codes, obfuscation, secure transfer).
- Create a Record of Processing Assessment (ROPA) with your legal department.
- Arrange data access with LHIS.
To make an access request, please initiate the process by contacting us via the options below, outlining your needs.
HELP DESK
Health Data Research Facility (HDR-F) staff are available to provide assistance with profiling and accessing the LLR-DfR dataset. Please get in touch.