Understanding Patient Data aims to make the way patient data is used more visible, understandable and trustworthy, for patients, the public and health professionals.
We work with patient groups, charities, NHS organisations and policymakers to bring transparency, accountability and public involvement to the way patient data is used.
Understanding Patient Data (UPD) is a programme based at the Wellcome Trust offices in London, UK. 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.
History
Understanding Patient Data was set up in 2016 to support conversations with the public, patients and healthcare professionals about uses of health and care data. It was originally a two-year initiative, supported by Wellcome, the Medical Research Council, the Economic and Social Research Council, the Department of Health and Social Care, and Public Health England.
The programme was extended beyond the initial two years and since then UPD has been based at Wellcome. We’re proud of the work that UPD has delivered in that time, whether it’s the support we’ve given our friends and partners, the resources we’ve created, the Data Saves Lives animations we developed, our public engagement work or advocacy on what trustworthy use of health data means in practice.
In 2021, Wellcome launched a new strategy, which focuses on the urgent global health challenges of mental health, climate and health, and infectious disease. Because UPD’s sole focus is engagement, policy and communications about the use of patient data in the UK, it doesn’t fit with Wellcome’s new strategic priorities, so Wellcome won’t continue to support the programme after the end of 2022. Read our update from October 2021, to see what this means for the future of the team, and what's happening next.
Meet the team
Due to the changes at Wellcome mentioned above, UPD now operates as a programme within Wellcome's Data for Science and Heath team, with the following people responsible for UPD projects and comms:
-
Harri Weeks
Partnerships Manager
-
Rebecca Asher
Strategy and Engagement Manager (job share)
-
Emily Jesper-Mir
Strategy and Engagement Manager (job share)
Documentation
We want to be open about what we work on, why and what the impact has been. Here we publish our annual reports and notes from steering group meetings.
Annual reports
Steering group meeting notes
Until October 2021, we had a steering group to help provide strategic direction and oversight for our work. You can review the most recent minutes below:
Funding
Understanding Patient Data will be hosted by Wellcome until the end of 2022. It is also funded by the Medical Research Council and National Institute for Health Research.
Our views and outputs are independent of Government and the other funders.