Data access
Using the audit to understand how we can improve care
NEIAA contains a wealth of information about arthritis care in England and Wales. HQIP and the BSR are committed to ensuring that the value of these data are maximised and that information is accessible to research teams. Data from the audit will be used to improve health, care and services through research and planning.
The NEIAA has CAG approval to process and share data for research.
How we protect the data
Only anonymised patient data are released for the purposes of research.
Before patient data are released:
- All personal identifiers are removed
- All dates are encrypted
- All geographical identifier information is removed
- All hospital identifiers (including NHS numbers) are removed.
Full information about the research database process as well as the Confidentiality Advisory Group approval are available on request.
The right to have your data removed
Individuals can ask to have their data removed from the research database. Anyone wishing to do this should contact audit@rheumatology.org.uk and the research team will permanently erase the record.
How researchers can access the data
Research requests are approved through the central HQIP process and the data access request form is available here.
A series of short films and website content has been published by HQIP to support researchers and clinicians who wish to access health and care data for uses beyond treating individuals.
Understanding Health Data Access (UHDA) project is a suite of introductory resources explaining the rules that govern how health and social care data is shared in England and Wales. It includes:
- An Introduction to Developing Good Data Applications– an animated film introducing the principles that data custodians work within to ensure that data is shared safely, legally, fairly and with public benefit. This will be of particular benefit to those with little previous or recent experience of making data applications.
- The Duty of Confidentiality – a more detailed look at the legal requirements around the Duty of Confidentiality: how it arises, how it can be met, and how it applies to health data applications.
- Planning a Health Data Application: Questions and Information Sources - a downloadable guide illustrating key steps in planning an application, and providing collated guidance and information across the research and data sharing pathway.
The NEIAA Data Access Process is available here.
Anyone wishing to make informal enquiry about data access can contact audit@rheumatology.org.uk.
Currently approved research requests
University of Bath- Outcomes of early psoriatic arthritis in a UK nationwide cohort (OPAK study phase I)
