Today, Understanding Patient Data (UPD) has published new research 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. 

This blog offers a quick summary of the findings, links to the report and a Health Information Scorecard to help teams put these insights into practice. 

The power of small moments of explanation

This report builds on previous UPD research, which found 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 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 an answer to. 

So, we decided to test out the findings from our previous research with a group of national health charities. 

We setup a Community of Practice of eight 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). 

PIF are now working with us to share the findings with their members. 

We also commissioned Rocket Science to run an evaluation, which included focus groups, an online survey and interviews with community members – take a look at the report for more detail

The findings

“Very few people are aware of who accesses data outside of GPs and healthcare providers. It’s not clear who is exposed to the data.”

The key insights for teams that develop, publish and maintain health information are: 

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. 

As one person said, including this information 'makes it credible, reliable, and convincing'. 

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: 

“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 reader’s knowledge about 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'. 

The explanations of how patient data is used are relatively light touch. 

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 …”. 

This research indicates these kinds of small tweaks can have a substantial impact on people’s reaction to health information. 

And they can help develop people’s general awareness of how patient data might be used.

The links

Change will take time

Explaining patient data alone will not build people’s trust in how data is used. 

Engagement, good governance and a range of other actions are needed to make the system more trustworthy – UPD have mapped some of them out here.

Raising people’s awareness is just one part of the picture – but it’s a crucial one and will take many different approaches. 

We think this approach offers a lot of potential – but change won’t happen overnight. 

Increasing 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.”