Health insights gained from smart tech and wearable devices could be bolstered dramatically by safe and secure linkage to electronic health records, according to researchers at the Big Data Institute and BHF Data Science Centre.
Such insights could be used to address some of the UK’s most pressing medical concerns, the research team suggests.
Around nine in ten people in the UK have access to a smartphone, making it an easy way to take part remotely in studies and reduce barriers to participation in research.
Data gathered in this way may reflect real-world situations better than traditional studies and are relatively quick, cheap, and robust, due to the potential for very high numbers of people to take part.
Gathering research data through digital devices such as smartphones has become more popular, thanks to studies such as the ZOE Health Study, which achieved rapid results during the COVID-19 pandemic thanks to the large number of people taking part on their smartphones.
Overall, however, widespread advances have been hampered by an inability to link with data from a person’s health records, say the authors.
Securely linking wearable data to existing medical records provides doctors and researchers with a more comprehensive overview of a person’s health, allowing them to spot relationships, for example, between symptoms or lifestyle factors, and later disease onset or severity.
The editorial, published in the Journal of Medical Internet Research, sets out a course for transforming health research through wearables, based on the outcomes of two major stakeholder workshops.
The authors, led by academics from the Universities of Manchester and Oxford, highlight that research priorities set by the public across major health conditions all include questions that could be addressed by digital devices. Together, these conditions, including arthritis, heart disease, and dementia account for a huge proportion of worldwide disease and disability.
However, this requires investment in areas such as building public trust, improved data synchrony across studies, and better equality in terms of who has access to a smartphone or wearable device.
Professor Aiden Doherty, lead author and Professor of Biomedical Informatics at the Big Data Institute at the University of Oxford, said: ‘Patient-generated data offers a wonderful opportunity to transform our understanding of the causes and consequences of disease. To unlock this potential, our paper underscores the need for an ambitious collaborative effort from industry, academia, healthcare professionals and patients.’
Associate Director for Personal Monitoring at the BHF Data Science Centre and consultant cardiologist, Professor Tim Chico, said: ‘This is a very exciting time for wearables research, but it will take a huge joint effort to unleash its full potential and ensure no one is left behind. Our goal is to answer vital research questions that matter to patients across many diseases and wearables have a huge part to play – linking healthcare records in an ethical way will be crucial in this.’
Lynn Laidlaw, public contributor, peer researcher and co-author of the paper, said: ‘Smartphone and wearables data has such promise for improving people’s lives through research. Involving patients and the public will be an essential, non-negotiable element to moving the field forward, as unlike current data research such studies can only be undertaken if people are willing to share their data. This changes the existing power dynamic between researchers and the researched. People will need to be assured that the information they donate is treated appropriately and respectfully and is used to answer questions that matter to them.’