Understanding Patient Data aims to make uses of patient data 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. Get in touch to partner with us.
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.
You can find out about our history, governance, funding and supporters on this page, or contact us for more information. Understanding Patient Data (UPD) is led by a small core team, based at the Wellcome Trust offices in London, UK.
Aims and objectives
We do this in five connected ways:
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Creating resources – we produce engaging, accessible information resources and guidance on how to talk about patient data, freely available on a CC-BY license.
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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.
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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.
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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 take on board people’s questions and concerns to build more trustworthy systems for managing and using data.
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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.
As awareness about data use grows over time, UPD’s role will evolve into promoting other, more diverse voices to both champion exciting stories about the potential of data and scrutinise the systems that govern how it is used.
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.
Led by Nicola Perrin, UPD initially focused on developing information resources and guidance in accessible language to use for explaining data to patients and the public. You can read an evaluation of this period of activity here.
At the end of the initial funding period, there was a strong case to continue the initiative, in light of advances in data science and increasing interest from researchers, industry and media about using health data.
Meet the team
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Harri Weeks
Partnerships and Community Manager
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Rebecca Asher
Strategy and Engagement Manager (job share)
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Emily Jesper-Mir
Strategy and Engagement Manager (job share)
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Tom Harrison
Senior Policy Officer
Work with us
If we have any upcoming vacancies in the team, we'll post them here.
Governance
A Steering Group helps provide strategic direction and oversight for our work. Our current members are:
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Charlotte Augst CEO, National Voices -
Joanne Bailey Member of National Data Guardian Panel -
Shera Chok Co-founder and Chair, The Shuri Network -
Harry Evans Senior Adviser in population health management, NHSE -
Rachel Knowles Programme Manager for Clinical Sciences, MRC -
Sara Marshall Head of Clinical & Physiological Sciences, Wellcome Trust -
Sir Nick Partridge Deputy Chair, UK Clinical Research Collaboration -
Claire Sutton Digital Transformation Lead, National Care Forum -
Jeremy Taylor, OBE Director for Public Voice, NIHR
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
Funding
Understanding Patient Data is hosted at Wellcome and sits as part of the Data for Science and Health Priority Area team, for the period 2019-2024. 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.
Partners
These organisations support the work of Understanding Patient Data, sharing information and engaging with their membership to help develop the team’s ideas and resources. Please get in touch if you’d like to add your organisation – we are always looking for ways to build the patient data community.
