Since May 2021, PIF has been part of a community of practice led by Understanding Patient Data (UPD) aiming to explain how data is used to inform health information guidance. It is hoped the project will improve patient engagement and trust in health information.

The project also hopes to generate more evidence on the ‘right moments’ to explain data use, building on UPD’s 2020 How to Talk About Data research. That project highlighted condition-specific websites as important sources of information. Several national health charities have been part of the UPD community of practice, reviewing their health information and designing updates. These changes are being kept deliberately small – UPD hopes to evaluate whether lots of small pieces of information, in a context that’s relevant to the individual, can have an impact.

As a result of our involvement, PIF has updated our Communicating Risks, Benefits and Uncertainties guidance and produced a short guide to patient data for members of the public.

In Autumn 2020 an evaluation framework for the project was developed in collaboration with Rocket Science. This is currently underway and the final outcomes of the project are expected to be reported in Spring 2022.