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


Health charities provide a huge amount of information and guidance to their communities—whether via their websites, leaflets and newsletters, or through other channels. That guidance often has many sources, from clinical trial data, to patient surveys to routinely collected patient data. It might help people understand a condition, manage symptoms or learn about different treatment pathways. However, it’s not always clear where the guidance is coming from. Can people fully trust and engage with information without knowing its source?

Previous UPD research 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. 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. This research recommended moving away from the idea of a high-level ‘national conversation’ about how data is used, towards embedding information about data use in smaller ‘moments’ which offer a window into the wider system.

We worked with a group of health charities to test out the impact of including information about patient data in their guidance on patient understanding, trust and engagement. We setup a Community of Practice of 8 national health 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.


What we did

In May 2021 we held the first meeting with our community of practice to decide how to work together, and to confirm timelines and outcomes for the project. Flexibility was central to the design of the project as we didn’t want charities to have to commit significant extra resource to participate. Instead, we hoped that the changes to their health information could be made alongside routine updates.  

We met again in June 2021 to discuss the findings from our ‘How to talk about data’ research and to work through examples of the type of change we would like to see in health information. Sheena Campbell, communications manager at the Patient Information Forum reflected on how useful it was to engage with our previous work: 

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After this, the charities began identifying areas where they could refresh their health information and started to write and design their updates. We aimed to make these changes live from the end of September 2021 onward.  

For example, Best Beginnings, a charity which offers advice to new and prospective parents, sought to update their information on choosing a birth place on the new version of their Baby Buddy app. Mariana Jose Santos da Silva, evaluation, policy and impact officer described what they hoped to gain from participation in the project:  

“Collaborating with UPD will hopefully help us improve the way we communicate where our data comes from, and drive engagement from our users”.  

What we learned

The changes the charities were making to their information were intentionally relatively small. We were deliberately not looking to explain how health data is used in lots of detail—instead we hoped to evaluate whether lots of small pieces of information, in a context that’s relevant to the individual, can have an impact. This fact, combined with the different information formats used by each of the charities, made evaluation of the project challenging. We worked with Rocket Science to help us co-design an evaluation framework with the community of practice. We then used a variety of quantitative and qualitative methods to determine if these small changes had an effect, including interviews with people who use the health information, A/B testing, website surveys and click-through website data.

We shared the findings of the project in Spring 2022:

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