This research investigates the impacts and challenges of including information about patient data in health charities' guidance.

What we did and why

We worked with a group of health charities to test out the impact of including information about patient data in their guidance.

This builds on previous UPD research, which found that adding small explanations about the role patient data plays in developing guidance about health can help build people’s awareness of how the system works.

During that research, lots of participants said that health charities are an important and trusted source of information. From understanding a new diagnosis, to finding out about new treatments – people often turn to health charities to help them navigate moments of change, or when they have questions they want answered. 

We setup a Community of Practice of 8 charities: Asthma + Lung UK, Best Beginnings, Cystic Fibrosis Trust, MS Trust, Stroke Association, National Autistic Society, British Heart Foundation and the Patient Information Forum (PIF). We also commissioned Rocket Science run an evaluation, which included focus groups, an online survey and interviews with community members.

Quote from a research participant: “It’s gradual. Over time you can imagine that it would lead to a shift in consciousness around how we interpret data.”

What we learned

1. Small changes can make a big difference: adding short explanations about the way patient data is used to inform health information had a noticeable and influential impact on the readers’ perception of the health advice. As one person said, including this information “makes it credible, reliable, and convincing”.

2. Explaining can help build trust: the inclusion of explanations of the use of patient data increased levels of trust and credibility in the information provided: “I appreciate transparency, I always question information no matter who produces it. [Transparency] builds confidence and trust, even if it’s just a few words”. The NHS was particularly seen as a trustworthy and credible source.  

3. Improving awareness of how the system works: importantly for UPD, including explanations of patient data use was linked with increasing the knowledge of the reader as to how data is used beyond providing their own care: “As a patient reading this, I come to the conclusion that mine [data] may be used for similar purposes in present or future instances.”

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. One person said that a small bit of information about patient data “would make me want to read further – to go another step.”

5. There are no quick fixes: participants acknowledged that building people’s awareness and data literacy is a process which will take time. As one participant said: “It’s gradual, over time, a few years down the line you can imagine that it would lead to a shift in consciousness around how we interpret data.”

6. The community of practice approach is useful for supporting change and networking. For some members, transitioning to including more data in health information required a shift in approach, and there remain opportunities to develop how patient data use is explained in health information, and appetite among members to focus on this in future.

If you've got questions about this work or are interested in putting the findings into practice, drop us an email at hello@understandingpatientdata.org.uk.