By Iain Millar, Graduate Trainee

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?  

At Understanding Patient Data, we’re working with seven national health charities, to test different ways to explain how data was used to develop their health information. We’re interested in whether small changes can improve patient engagement and trust in health information.  

More broadly, we’re hoping to generate more evidence on the ‘right moments’ to explain data use, building on our previous ‘How to talk about data’ research. This research recommends 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. The research further suggests that a key moment is during times of change to a patient’s condition or care needs, as people are more likely to seek out information.  

Health charities as a trusted source of information  

People we spoke to during the ‘How to talk about data’ research mentioned that condition specific websites are seen as important sources of information. Given that this information is most often provided by national health charities, we reached out to some of them to see whether they might be interested in making some small changes to their information. Our goal is to work with them to evaluate the impact of these changes on understanding, trust and engagement.  

Image of the quote from Sheena Campbell included in the blog post

Getting the project off the ground  

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 is central to the design of the project as we don’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 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 reflects on how useful it was to engage with our previous work: 

“I think the key message that really stood out to me is how important it is to be explicit that data from 'real people' informs health information.... It turns patient data from an abstract, and often intimidating idea into a clear way to help improve care for everyone”.  

Since then, the charities have been identifying areas where they are going to refresh their health information and have started to write and design their updates. We are aiming to make these changes live from the end of September onward.  

For example, Best Beginnings, a charity which offers advice to new and prospective parents, is looking 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 describes what they hope 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”.  

How will we know if the changes are having an impact?  

The changes the charities will be making to their information are relatively small. We’re deliberately not looking to explain how health data is used in lots of detail – instead we’re hoping 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, makes evaluation of the project potentially challenging. We will be working with Rocket Science to help us. They will co-design an evaluation framework with the community of practice.  

What’s next?  

Following the co-design workshop, we will use a variety of quantitative and qualitative methods to determine if these small changes have an effect. This could include interviews with people who use the health information, A/B testing, website surveys and click-through website data. We will share the findings of the project in Spring 2022.  

Alongside this work, we are continuing to develop our thinking about how to explain data, taking forward the insights from the ‘How to talk about data’ project. If you would like to learn more, or if you have ideas about how to trial different ways of communicating data use in your organisation, please do get in touch.