By Natalie Banner, Understanding Patient Data Lead & Tariq Khokhar, Head of Data for Science & Health at Wellcome.
The way Understanding Patient Data (UPD) is funded is changing. In this post we explain what’s happening and what it means for our team and the organisations we work with.
Understanding Patient Data is hosted at Wellcome, as part of the Data for Science and Health (DSH) team. In 2020, Wellcome launched its new strategy which focuses on the urgent global health challenges of mental health, climate and health, and infectious disease, underpinned by support for discovery research.
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. Wellcome will support UPD until the end of 2022 but won’t continue to do so in the longer term. UPD projects within Wellcome will carry on into next year and the majority of UPD staff will remain in DSH. Natalie will be leaving Wellcome at the end of October and will be supporting the team’s transition over the next few months.
What’s happening now
We are working with the other funders, the Medical Research Council (MRC) and the National Institute for Health Research (NIHR), and stakeholders, to explore the future options for UPD.
Beyond October this year, our current plan is to end UPD's government health data policy and advocacy activities. The UPD team will focus on the exciting projects already underway, which include:
- a project with the RCGP on primary care professionals’ attitudes to data use
- peer research on data equity for Black and South Asian people
- work with health charities on explaining how the use of patient data informs the health information they provide for their communities.
Alongside the projects, we are prioritising finding a home for UPD’s resources, influencing activities and support for the data community. We will provide further updates as these plans develop.
Reflecting on the last few years
We’re proud of the work that UPD has delivered at Wellcome over the years, 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 the advocacy we’ve done on what trustworthy use of health data means in practice.
UPD's goal has always been to support the community of organisations working in the patient data space - which goes beyond the UPD brand. It's brilliant to see how the community has grown and developed over the last few years, and we hope UPD has contributed to that progress.
Get in touch if you have questions
We know this news creates some uncertainty, especially as we’re still exploring future options for UPD. Do get in touch in the meantime if you have questions, either with a member of the team directly or at firstname.lastname@example.org.