Written by Grace Annan-Callcott, Communications Officer.

I recently wrote about a project we were working on with a design studio called COMUZI, to find the right moments to develop people’s understanding about patient data. The project was called ‘How to talk about data without talking about data’ - recognising that patient data is not the easiest topic to introduce people to. In this post, I will share a couple of the most important things we learned.  

What we did and why 

Explanations about the use of patient data are often abstract, using research or insights that don’t closely relate to people’s lives and what they care about. Starting with the data, not the people it’s about, makes it hard to get through to people who’ve got lots of other things to think about when managing their health. 

During this project, COMUZI helped us learn about how people interact with the health system and consider what matters to them. The team started by doing research with healthcare professionals and members of the public, to find moments where people would be open to learning about data. We wanted to find opportunities to explain to people how data is used to inform their care, and how data about them could be used to improve care for others, for example through planning services or research. 

Once we’d identified possible moments to explain patient data, COMUZI developed and iterated a series of prototypes to test out our ideas. The prototypes aren’t concrete products or solutions, instead they show practical examples of how to explain patient data at the right time, with the right level of information for that context. 

What we learned 

We want the prototypes COMUZI developed and the things we learned to be useful for other teams thinking about how to engage with people on issues around patient data. Here are a few of the most important insights. 

1. Give people information that’s relevant to their context 

People are more likely to be interested in learning about how data is used if it also helps them understand their own condition(s) and treatments. Research participants said that they are always looking for new information to help them manage their health. Especially during moments of change like when they’re offered a new treatment or drug, or newly diagnosed with a condition. That makes these moments good opportunities to explain how patient data informs people’s care. 

One of the prototypes COMUZI developed was a blood test results letter - specifically a ‘fasting plasma glucose test’ - which is used to screen people for diabetes. COMUZI redesigned the letter to show how research using data from health records had helped establish this person's likelihood of developing diabetes. Participants said that learning about the data behind the result would help them understand more about their health and could help motivate them to change behaviour. They also said the letter helped them learn about why it's important to collect data and that their care was informed by data about other people.  

Prototype blood test results letter
Prototype blood test results letter

2. Covid-19 has created new moments where it’s possible to explain data  

Data has been crucial in the response to Covid-19. The importance of the effective and responsible use of health data has been discussed in public in a way that’s never happened before. And decisions about how to use data are having real and immediate impacts on people’s lives. The role of data in managing Covid-19 came up a lot in our research, especially in relation to making important decisions like how to protect vulnerable groups.

 COMUZI developed a prototype letter that communicates changes to the shielding advice for vulnerable people. The letter includes a hypothetical explanation of the data and process behind the initial advice to shield and the new guidance. Participants felt the letter clearly explained how data from medical records informed the decision and said it was good that the NHS uses data to make these kinds of important decisions. This insight will continue to be relevant when advice changes for different people as we learn more about Covid-19. 

3. Be aware how much you can explain in one interaction 

The waiting room was identified in research as a moment where there’s an opportunity to explain patient data, so COMUZI designed a prototype video for that setting. The video goes into more detail than the other prototypes on how patient data is collected, used and protected. Whilst participants said the video helped them understand how the healthcare system uses data, it also raised far more questions and concerns than the other prototypes, mostly about security and third-party access to data. Provoking questions is not necessarily a bad thing but people need to be able to go somewhere for answers, which is hard in a waiting room context. 

Sketches from prototype video
Frames from prototype video

It’s important to recognise that there’s a limit to how much can be explained in one interaction – and that limit is dependent on what’s appropriate in each context. It's a long journey between the information people need to manage their health and being able to develop their understanding about data (which I've sketched out below). Trying to explain too much in one go can be overwhelming for people and lead to more anxieties than answers. Instead, it’s possible to seed information across lots of moments or interactions to gradually build people’s understanding of how data is used. 

Sketch of diagram of journey from context to data
Sketch of the journey to developing people's understanding of patient data

4. Healthcare professionals want practical examples of how data can improve patient care 

The healthcare professionals COMUZI interviewed talked about the importance of using data for individual care. But some of them said it wasn’t always clear how data is used to improve patient care and NHS services on a bigger scale. For example, one professional said: ‘We don’t know what all that tick boxing does to help the patient and what you’re going to do with it.’  

However, the professionals COMUZI spoke to said they were interested in learning more about how secondary uses of data can help improve patient care. So COMUZI developed and tested the idea of a series of virtual events for healthcare professionals. Each week a different professional would share examples of how they've used data to do research or improve care and services. Participants told us they would be interested in attending the events as long as they included real examples of improvements that were made as a result of using data. They thought that learning more about data could help them in their work and were especially keen on practical ideas to bring back to their own department or trust.  

Prototype flyer for healthcare professionals' seminar
Prototype flyer for health professionals' seminar

Next steps 

Working on this project with COMUZI was brilliant and we learned loads as a team. We’re starting to present our research findings and prototypes to colleagues and partners, so if you’d be interested in finding out more about this project please do get in touch. We’re especially keen to hear from people who think they could use the ideas we’ve shared here in their own work.  

Write to us at hello@understandingpatientdata.org.uk if you’d like to chat!