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
designed to improve accessible, introductory information to these rules and processes, providing:
- 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 it will minimise 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
it how it applies to health data applications.
In this downloadable visual guide you will find links to 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
communications@hqip.org.uk