The potential for how patient data can be used in the health system has changed significantly in recent years. That potential will continue to develop at speed in future. The Patients Association believes gathering patient perspectives and giving patients an opportunity to share the views on how data can and should be used, must be a fundamental part of realising that potential. 

We’re pleased that we have been able to offer patients the opportunity to have their say on how their health data is collected, managed and used several times in recent years.

Patient voice

Last year we worked with the Department of Health and Social Care to give patients the chance to shape the development of a Data Pact, which aimed to give the public confidence about the way patient data are used in the health and care system. Shortly before that, we partnered with the University of Manchester to obtain patient insights on the GP Data for Research and Planning (GPDPR) programme.

What came through loud and clear in both of those projects was that health data are a hugely important topic for many patients. As an organisation that prides itself on gathering and championing patient perspectives, we are pleased to give patients a voice in the next stage of our work on patient data.

This April, the Federated Data Platform (FDP) will begin operation across England. The FDP will bring together, into one place, information that has previously been stored in separate systems in different parts of the NHS, with the aim of improving care and reducing administrative burdens on staff.

We’ve welcomed the potential of the FDP to improve patient care and to create capacity for shared decision making, but we have been clear that patients need to understand what is happening, how, and why, if the potential benefits for patients are to be realised.

Foundry

Last year NHS England announced that Palantir’s Foundry software will be used to deliver the FDP. In our latest project, we are working with Palantir to give patients the chance to pose questions about what the Foundry software is and does, and to shape how the software is described. Responding to these issues in a language that patients understand will be a fundamental part of this work.

The project will result in the production of a patient-led public guide that explains what Foundry is and does, accompanied by a video animation that addresses the key questions patients have and the issues they raised.

Through this project’s work we aim to spread understanding among patients of the technology that will underpin the FDP and to ensure these resources reach as many patients as possible.

We look forward to sharing the findings with our members, supporters, and our wider network as the project develops.

3rd April 2024