Understanding Health Data Access (UHDA)
Complex rules govern how health and care data can be shared for research, innovation, healthcare improvement and other uses beyond individual patient care. Making sense of the permission process and legal requirements can prove daunting, both for new data applicants and for any patients and the public interested in understanding how the system works in practice.
The Understanding Health Data Access (UHDA) project is a suite of short films and written resources which provide:
- an overview of how to design projects which both protect patient privacy and meet legal requirements
- an understanding of how to construct data applications clearly, thereby improving the chances of success and reducing the risk of avoidable delays
The information in the resources introduces some of the key legal requirements for data sharing in England and Wales. It applies to all applications regardless of who the data custodian is.
An introduction to developing good data applications
A good application will explain exactly and in detail which data you need, why you need it, how it will be used and by whom. Most importantly, you need to show how you have minimised the impact on patient privacy and explain the public benefit you intend to achieve. This introductory film guides you through these elements.
The duty of confidentiality
This animated film explains in more detail some of the key areas of data-sharing legislation that were referenced in the introductory animation. It has a particular focus on the duty of confidentiality and how it applies to health data applications.
There is additional guidance and information across the research and data sharing pathway that you may find helpful in designing your data project.
The UHDA project was funded by the Health Foundation and delivered by Healthcare Quality Improvement Partnership (HQIP) with input from Health Research Authority (HRA), Medical Research Council (MRC) Regulatory Support Centre, National Joint Registry (NJR), NHS Digital, NHSX, Office of the National Data Guardian, Public Health England, Health Data Research UK, Clinical Practice Research Datalink (CRPD), Understanding Patient Data and others. The project also benefitted from the insight and guidance of public and patient representatives and patient charities, as well as from data applicants themselves.
For further information about the UHDA project, please contact HQIP at firstname.lastname@example.org