Interview: Dr Olivia Swann on the Homes, Heat and Healthy Kids study

Dr Olivia Swann is a paediatrician and data scientist at the University of Edinburgh. She is leading the Homes, Heat and Healthy Kids study, which brings together health, housing and energy data to investigate how cold and damp homes affect respiratory infections in children. Research Data Scotland spoke with Olivia about data linkage, the value of reusable datasets and the role of public involvement and engagement within this work.

Can you tell us a little bit about yourself and your experience?

Dr Olivia Swann: "I'm a children's doctor and data scientist working in Edinburgh, with my time split between the Royal Hospital for Children and Young People and the Usher Institute. I specialise in infectious diseases, with my PhD looking at malaria. During the Covid-19 pandemic, I turned to coding because there was all this data involving children that nobody was looking at. I taught myself to code from my sofa.

"If you'd told me ten years ago that I'd become a data scientist, I'd have laughed. But once I realised what data could help answer, it completely changed my perspective. Data science gave me a new way of exploring questions I was seeing every day in clinical practice."

What inspired the Homes, Heat and Healthy Kids study?

"This project came about because my clinical colleagues and I realised we were seeing the same children with respiratory infections again and again, and that we were sending them back to homes that weren't necessarily making them better.

"As doctors, we’re taught to ask about lifestyle factors like jobs, smoking and drinking, pets and travel, but never in all my medical training was I taught to ask about people’s homes. When I started asking families about their homes, a lot of them told me they couldn't afford to heat them, that they were cold and damp. A small group of families also said that health problems had become worse after certain energy efficiency interventions.

“Hearing these problems first hand as a clinician is when I started to design this study in my head.”

How has data linkage made this research possible?

"Around the time that I was starting to design the study, CHI-UPRN linkage – known as CURL – was becoming available.

“For the first time ever, we could link healthcare records with every home a child had ever lived in. That was huge.

“Before CURL, most analyses looking at children’s homes had largely relied on postcode or neighbourhood-level information. It’s a good start, but it only tells you about the area, not an individual home. It’s hugely important from a policy perspective that we get as granular data as we possibly can.

"I like to describe the CURL file as a washing line that you can peg different datasets onto. Once that washing line existed, suddenly you could connect information in ways that weren't possible before.

“The project brings together information from health, housing, energy and environmental datasets, creating opportunities to answer questions that would have been impossible before.”

How did you go about building the study?

“I successfully applied for a Wellcome Trust fellowship which began at the end of 2024. The year before that started, I spent most of my time trying to work out what data existed. Because these different types of data aren’t normally linked up, there were huge amounts of information out there that had never been combined. Now there were all of these wonderful opportunities.

"I wrote a lot of cold-call emails to people in the Scottish Government and the Department for Energy Security and Net Zero outlining what I wanted to do and why I needed the data. The responses were phenomenal. The data controllers themselves could see the potential public benefit. The response was often, 'Yes, we get this. Let us help.'"

Energy datasets are crucial to the project. They provide information not only on how energy efficient a property is but also how much energy the household is actually using, which helps researchers to understand the difference between a house that is efficient on paper and one that is warm enough for the people living there. Without those datasets, Olivia says, the study simply would not be possible.

Public involvement has played a major role in the project. Why was that important?

"We've worked closely with a group of families from across Scotland who have experience of raising children in cold homes. They're brilliant and they've been so good at keeping the research grounded and making sure we're asking the right questions.

"We wanted this work to be more than asking the group for their views, and instead asked people what would be meaningful to them and one of the things they told us was that they'd like opportunities to gain skills and qualifications.

“So we partnered with Media Education, and group members have created videos, took part in workshops and gained an SCQF Level 5 qualification in community leadership. Some have since spoken at events and become advocates for the issues explored in the project. Recently, one member shared his video at the Cross Party Group for Lung Health in the Scottish Government.

"We call this approach 'beyond payment' because it's about recognising lived experience as expertise and creating opportunities that last beyond the project itself."

Beyond the research itself, what impact do you hope the project will have?

"I'd love this project not only to improve children's health but also to improve the data infrastructure in Scotland. There's no reason that the methods we're developing couldn't be used to study other conditions or populations in the future.

"Whenever we have had the opportunity, we have made sure that the data we are using can be available for other researchers in the future. It has taken longer to do it this way, and as a researcher that's sometimes frustrating, but I think it's worth it.

"Having well-worn tracks of how to link these things is what I think the legacy will be.”

Read our case study to learn more about this project. You can also find information at Homes, Heat and Healthy Kids.