Consumer Data Research Centre
 

Assessing attitudes to lifestyle data and health research

Assessing attitudes to lifestyle data and health research

Health researchers have launched a major survey to see if people would be prepared to allow their lifestyle data to be matched against their health records.

The survey aims to gauge whether members of the public support such large-scale data analysis and marks the start of what could be the biggest investigation ever into the interaction between lifestyle and health, with scientists saying it could provide important insights into cancer, diabetes and cardiovascular disease.

The survey, which is anonymous and just takes a few minutes to complete, can be found by on the LifeInfo Survey website. It is open to all adults in the UK and the survey will remain online for the next 12 months.

The survey is being organised by a research team from the University of Leeds and Leeds Teaching Hospitals NHS Trust.

The research team’s longer term aim is to use information about an individual’s shopping habits collected from supermarket loyalty cards – or diet or physical activity recorded by mobile phone apps or wearable technology such as a Fitbit – and analyse it against their health records.

If they can do that on a mass scale, they could identify trends and links between lifestyle and health and disease.

“If we could harness the mass of data that is already collected on how people lead their lives and see how that interacts with health, then we could get a much more precise picture of the role of lifestyle factors on health”
ADAM GLASER, PROFESSOR OF PAEDIATRIC ONCOLOGY

Respondents to the online survey are under no obligation to take part in any future research. They will be asked if they are part of a supermarket loyalty scheme or have a wearable app such as a Fitbit or use phone apps that record exercise or calorie intake.

They will be asked if they would consider, in the future, sharing that data with researchers and having it linked to their health records, on condition the data would be stored securely and not made available to anyone outside the research team – including employers, insurers and other organisations.

CDRC Researcher Dr Michelle Morris from the Leeds Institute for Data Analytics is one of the chief investigators. She said: “This first stage of the project is about finding out whether people feel comfortable with sharing their lifestyle data and having it linked with their health records for future research. And if they have concerns – can we do anything to allay those concerns?

“This information is already being collected by commercial organisations – we just want to see if people would allow us to use it to investigate some big health challenges and look at ways of improving health.”

If the online poll does show there is public support for using lifestyle data in health research, the project will move to the next stage, where people would be asked if they would take part and consent to sharing their data.

Future studies involving lifestyle data

Although scientists are already finding links between lifestyle and illness and conversely lifestyle and health, those studies are often based on smaller data samples that may be incomplete or inaccurate because they rely on people self-reporting what they eat or how much exercise they take.

An approach using lifestyle data opens up the possibility of gaining new insights into why some people remain healthy and others suffer ill-health.

Adam Glaser, Professor of Paediatric Oncology and another of the project’s chief investigators, said: “We know that lifestyle factors can both contribute to disease and also offer protection from it.

“But our understanding is often very broad. If we could harness the mass of data that is already collected on how people lead their lives and see how that interacts with health, then we could get a much more precise picture of the role of lifestyle factors on health.

“It would help us identify possible treatments and new ways health workers could intervene to help people, and we could also assess how successful those interventions would be.”

As an example, he says doctors are often unable to explain why some children are born prematurely – increasing the chances the baby will experience some disability. But there may be clues in the lifestyle of the mother, be it her diet or patterns of physical activity, as to why the baby was born early.

The University is involved in confidential discussions with retailers about the release of loyalty card data, where customers consent.

The survey can be found here.

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