Explaining the role of patient data in guidance

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 has generated 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 were part of the UPD community of practice, reviewing their health information and designing updates. The changes were kept deliberately small. 

In Autumn 2021 an evaluation framework for the project was developed in collaboration with Rocket Science. This allowed UPD to evaluate whether lots of small pieces of information, in a context that’s relevant to the individual, can have an impact.

The final report into the project was published in July 2022. You can read it in full here.

In this blog, Grace Annan-Callcott, programme adviser at Understanding Patient Data, tells us more about the project.

A scorecard to help organisations assess how they are explaining patient data has also been developed. It is available to download below.

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.

Adding short explanations about the way patient data is used to develop health information can have a positive impact on the readers’ perception of the health advice. These small changes can also help increase people’s understanding of how data is used beyond direct care.

This scorecard is for teams that want to improve their health information by adding short references to the role of patient data. 

For example, instead of: “1 in 2 people will develop some form of cancer during their lifetime”, a piece of guidance might say: “Based on NHS data collected from people’s medical records, 1 in 2 people will develop …”. 

The scorecard was developed during research by Understanding Patient Data, which indicates that these kinds of small tweaks can have a substantial impact on people’s reaction. It is best used alongside the findings from the research.