Members of the public have helped scientists at the British Heart Foundation (BHF) Data Science Centre conduct a new study, to help understand how data from smartphones and wearables (such as fitness watches) could be used to improve cardiovascular health. One of the contributors, Nicola, joined the group after her triathlon-running husband was alerted to a heart condition by his Garmin watch.
As a regular competitor in Ironman and triathlon events, Chris Monk could often be found out for a run after work. But in November 2019, after a standard 10k run whilst in Australia on a work trip, his Garmin watch showed that his heart rate was not slowing down as normal.
‘There had been times before where his heart rate hadn’t slowed down at a normal rate, but he’d just chalked it up to work stress or everyday anxiety,’ remembers wife Nicola, 34. ‘This time was different so he took himself to hospital, and showed them his fitness watch.’
Chris was immediately admitted and kept in overnight, where he was diagnosed with atrial fibrillation. Atrial fibrillation (AF) causes the heart to beat abnormally and, left untreated, can increase the risk of stroke, heart failure, and other heart-related problems.
‘It’s all thanks to his smartwatch that Chris was diagnosed,’ said Nicola. ‘It would’ve been so easy to dismiss if we hadn’t had that data.’
Nicola, who works for the NHS, was motivated by her husband’s experience to join the ‘Smartphones and Wearables Patient Advisory Group’ at the BHF Data Science Centre, led by Health Data Research UK. Along with 7 other members of the public, representing different backgrounds, Nicola helped design a study to understand how data collected from smartphones and wearables could support cardiovascular research.
‘Smartphones and wearables, such as fitness watches or clip-on heart monitors, collect data that is highly relevant to health research, such as heart rate and measures of activity, such as steps per day,’ said Dr Jackie MacArthur, Senior Scientific Programme Manager at the BHF Data Science Centre. ‘If this could be securely linked with a person’s NHS data, with their informed consent, this data could provide new insights into the causes and effects of cardiovascular diseases, and improve disease prediction, diagnosis and treatment.’
The Centre conducted a survey asking researchers and healthcare professionals to identify which types of data from smartphones and wearables would be important to their work. Another survey then asked members of the public how they would feel about sharing that data. Over 75% of the public said that they would be in favour of sharing the data which had been identified as most important for cardiovascular research – including heart rate, heart rhythm, activity, and sleep.
The list of smartphones and wearables data measures, which have been identified as important for research and acceptable to the public, will now serve as a starting point for the creation of a dataset for cardiovascular research. The BHF Data Science Centre is now setting out to address the funding, infrastructure and technical challenges involved and to make this vision a reality.
‘The development of real improvements in cardiovascular health will require the creation of a dataset that is representative of the entire UK population,’ said Dr MacArthur. ‘Public trust and support will be essential to this. Patient co-production and engagement of the public in this study is a starting point, but future studies will need to actively engage all sectors of the population and involve the public as partners, particularly in the design of public-facing materials and recruitment strategies.’
Now aged 38, Chris remains in good health and continues to use his Garmin watch to track his heart rate – whilst Nicola remains committed to being part of the BHF Data Science Centre patient advisory group.
‘I’ve seen first-hand the benefit of using smartphone and wearables data in my family, so it’s exciting to think about what we could achieve if that could be securely linked with NHS data,’ said Nicola. ‘It’s a great way of volunteering my time for something different, but which is still connected to furthering positive outcomes for patients.’