Clear, jargon-free explanations of patient data uses are essential. Without information about how the system works, patients and publics do not have access to what they need to know to engage meaningfully on the uses of health data.

Tricky questions

We wanted to understand more about how to get the best from UPD’s work and prompt ideas for what to do next. To do this, we set about asking ourselves some challenging questions, collaborating with Wellcome’s Public Engagement team to help us investigate:

  • Does being informed affect public confidence in patient data use beyond individual care? 
  • Does it matter how information is shared with patients’ and publics’?
  • Beyond being informed, do other factors, like personal experience, impact peoples’ confidence and attitudes to data uses?    

For this study, we commissioned design agency Spotless to speak to people about patient data. They held:

  • Nine interviews with a range of health and care professionals across the country to inform the research and get some context on their views.
  • 30 one-to-one interviews with members of the public across Leeds, London and Bristol.
  • Two public workshops held in London and Bristol.

A small, but diverse sample

It was very important to us that the participant sample was as diverse as possible. We wanted to hear from those who may not have necessarily engaged with health data before. The Spotless team worked with a diverse mix of participants considering gender, sexual orientation, ethnicity, religion, income, education, employment and frequency of interaction with the healthcare system.      

Our research questions were not easy to answer

With a tight schedule and a small sample size, we knew we would not be able to provide simple answers and make general statements from what we found. We also knew that the research questions were difficult ones to address and would likely generate more questions than they answered. This was in keeping with the exploratory approach we wanted to take.

There is no one public, but as we’d hoped, the insight we gained from the research was valuable, and you can find a summary below.

Research insights

  • Informed-ness and confidence are tricky concepts

Informed-ness, like confidence, is a slippery concept. It’s difficult to judge how being informed affects confidence. Both confidence and informed-ness are subjective, and a participant’s sense of either can change quickly over the course of an hour’s interview.    

  • The main public concerns (who, why, what, how) are echoed

Providing information about key concerns affected people's confidence, as we would expect from previous attitudes research. 

  • Lens of the individual

Through discussions, participants became more engaged in data uses beyond individual care, but repeatedly returned to discussing their, and their loved ones’, own care and experiences. People may struggle to see a connection between research and planning and benefits for individual care. 

“I don’t think I’ve ever thought about where is my data going, I’m just thinking about am I going to get better or not get better.”

“I’m just interested in what’s wrong with me at the moment, or someone in my family… I’m not interested in that, because that ain’t me.”

  • Experience counts

How much people may wish to engage with patient data is affected by their experiences. Some LGBTQ+ participants in our study were less likely to want to talk about uses of patient data with a doctor because of previously poor experiences with healthcare services. A familiarity with statistics through work or education also seemed to affect how the value of patient data uses beyond individual care was seen. Experience in the use of patient data at a frontline level has an effect on participant’s confidence in the overall efficacy of broader uses of patient data.

“When I moved doctors, I’ve noticed that the information I had didn’t move… even when my doctor is only three miles away.”

  • Trusted (and known) voices providing information

Participants referenced known and trusted voices from their own experiences, and were consistent with public attitudes research which finds higher levels of trust in the NHS and lower trust in companies.

Some participants thought UPD’s materials were NHS materials, despite not being NHS branded. Some thought the existence of an independent initiative like UPD was “weird”. This supports our view that UPD remains best placed working in a support role with others in research, health and care.

“Unless that’s an NHS thing I would never have even thought that there was an ‘Understanding Patient Data’ – unless it’s some string off of the NHS.”

  • Clinical consultations aren’t a good time to discuss patient data

Unsurprisingly, participants had a strategy focused around resolving their health issues when interacting with health services. They did not want to be diverted by information about patient data uses in health consultations. Participants felt non-medical information should be dealt with in other ways in places where you’d expect healthcare information.

“I don’t think there’s any right time with a doctor to whip out a disc [UPD Wheel] and a piece of paper [patient information sheet created by the research team]. You’re there because you’re ill. You want to get treatment.”

  • Why are you telling me this now?

There was a slight suspicion that information presented within this research was a precursor to change. A common theme from the workshops was the potential to create concern if information was perceived to be part a new narrative, signalling the potential of ulterior motives to starting this conversation now.    

“Why are you trying to make me aware of this now?”

What next?

This research supports the view that objective information around who uses data, how and why are important for confidence. We learnt as much about the perspectives, interests and motivations of patients from this research as we did about confidence. However, the research did raise more questions, providing helpful pointers for UPD going forward:

New case studies

People respond to examples that mean something to them. We’d like to source more relatable case studies for different groups of people that connect data uses compellingly to their health and every-day life.

Understanding how we can support health and care professionals

There were just nine interviews with health and care professionals. UPD would like to better understand their contexts, concerns and what support they might need from us in understanding and talking about uses of patient data.

Hearing more from diverse communities

Public surveys tend to target a representative sample of a population. This can make it harder to capture views and attitudes from minority communities. Going forward, UPD would like to explicitly explore how specific communities feel about the uses of patient data.