Understanding Patient Data (UPD) aims to make the way patient data is used more visible, understandable and trustworthy, for patients, the public and health professionals.
UPD, which is hosted by the NHS Confederation, works with patient groups, charities, NHS organisations and policymakers to bring transparency, accountability and public involvement to the way patient data is used.
We focus on data routinely collected as part of a person’s interactions with the health service, that might be used for purposes beyond individual care without explicit consent. This data is highly useful for research and planning purposes, by NHS bodies, academics and commercial organisations, but its use can be controversial.
We provide objective information about how patient data is used and bring the views of patients and the public to policymakers and data holders, to ensure data is being managed and used in ways that are worthy of public trust.
Aims and objectives
We do this in five connected ways:
- Creating resources – we produce engaging, accessible information resources and guidance on how to talk about patient data, freely available on a CC-BY license.
- Understanding people’s views – we commission and undertake attitudes research to understand people’s views, expectations and concerns about data use, with a particular focus on minoritized or marginalised voices.
- Developing the community – we support those who work with or care about patient data through convening and partnership projects, building a network of advocates and disseminating good practice.
- Influencing and advocating – we translate attitudes and engagement research into insights for policy and practice (at both local and national levels). We provide advice and consultancy to those who are making decisions about data use, encouraging them to take on board people’s questions and concerns to build more trustworthy systems for managing and using data.
- Communications and media – we provide advice and commentary to journalists and others seeking to understand the key issues about data, to promote more balanced reporting.