We’re thrilled to announce that Understanding Patient Data (UPD) has secured a new five-year funding settlement, thanks to the generous support of Wellcome, the Medical Research Council, the National Institute for Health and Care Research, NHS England, the Department of Health and Social Care and the Office for Life Sciences. This funding provides much-needed stability, allowing us to deepen our impact and strengthen our role in supporting the health data community at a critical time.
Our core mission remains the same
Since 2016, UPD has been committed to making patient data use more visible, understandable, and trustworthy. UPD seeks to ensure policy and decision-makers understand and are responsive to public views and values about how data should be managed and used, advocating for trustworthiness in practice. As an independent initiative hosted by the NHS Confederation since 2023, we work with patients, charities, researchers, and healthcare professionals to ensure clear, transparent conversations about how health data is used for care, planning, research, and innovation.
We are expanding our team and impact
The health data landscape is evolving rapidly, with major developments in legislation, technology, and policy fueling debates on initiatives such as a single patient record, AI in healthcare, a national data library, and patient choice in sharing their data. Plans for a new Health Data Research Service are also set to transform access to NHS data. With so much at stake, the need for open, transparent, and informed discussion has never been more crucial— and UPD is ready to step up.
With long-term funding in place, we are growing our team—with two new posts from April 2025—and strengthening our support for the health data community. We’ll be taking a more collaborative leadership role, working with partners to:
- Empower people and communities.
- Help data custodians and data users develop, use and demonstrate trustworthy practices.
- Guide policy development to create a fair future that reflects and respects public expectations.
We welcome your ideas to shape our next chapter
We’re actively shaping our 2025/26 programme and are looking for great new ideas, partnerships and opportunities for collaboration. If you’re working in the health data space, we’d love to hear from you!
???? Get in touch: hello@understandingpatientdata.org.uk
