Understanding Patient Data (UPD)

The Understanding Patient Data (UPD) initiative is aimed at improving the understanding of the general public in terms of how their health data is used and the benefits this can have across a number of areas from service improvement through to research and planning. UPD also takes the views of the public to those collecting and holding data to communicate their views in order to contribute to messaging that increases public confidence. The information below taken from the UPD website (available here) explains the aims and objectives behind the service.

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 health and care bodies (e.g. the NHS), academics, charities 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. 

• The Understanding Patient Data (UPD)  website can be accessed here.

Understanding Patient Data have carried out a number of research and resource development projects which are detailed on the UPD website. Please visit the page linked here to find out more.

• Email the Understanding Patient Data team at hello@understandingpatientdata.org.uk