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. Working with government, data custodians, healthcare professionals, patient advocates, researchers, funders and industry, we influence policymaking and communicate around the use of data to patients and the public. 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.
UPD is a hosted organisation of the NHS Confederation in London, UK. It is funded by Wellcome, the Medical Research Council, the National Institute for Health and Care Research and NHS England. Our remit is across the UK, and we collaborate internationally, too.
Nicola Hamilton, Head of Understanding Patient Data, says:
“Understanding Patient Data (UPD) is delighted to join the UK Health Data Research Alliance. We are looking forward to working collaboratively with leading healthcare organisations, researchers and charities to address joint challenges and establish best practices to drive progress in the use of data for research. UPD particularly welcomes the opportunity to strengthen the perspective of patients and the public in UK HDRA conversations about data use.”