Blog - Explaining how patient data informs health information (20 July 2022)

Summary

In this blog, Grace Annan-Callcott, Programme Adviser at the Understanding Patient Data programme (UPD) outlines the findings of a new report on the impact of including information about patient data in health charities' guidance.

The report investigates whether adding small explanations about the role of patient data in developing health guidance affects people’s:

• perception of the information or advice
• general awareness or understanding of how patient data can be used.

Working with a group of charities including Asthma + Lung UK, Best Beginnings, Cystic Fibrosis Trust, MS Trust, Stroke Association, National Autistic Society, British Heart Foundation and the Patient Information Forum (PIF), UPD set up a community of practice to research the impact of patient data in health guidance.

Content

The research provided some key insights for teams that develop, publish and maintain health information: 

1. Small changes can make a big difference. Adding short explanations about the way patient data is used to inform health information had an influential impact on the readers’ perception of the health advice. 
2. Explaining can help build trust. Including explanations about the use of patient data can help increase levels of trust and credibility of the information provided.
3. Improving awareness of how the system works. Including explanations of patient data use was linked with increasing the reader’s knowledge about how data is used beyond providing their own care.
4. Prompting curiosity. Explanations of how patient data is used also encouraged further interest from participants about the use of data and increased the likelihood of the reader seeking more information.