What could a new approach to health data mean for Geroscience research?

The Government recently announced a rapid review on the more efficient and safe use of health data for research and analysis for the benefit of patients and the healthcare sector. The review is due to conclude in April and aims to capture information on a whole range of factors affecting the availability, use and processing of patient and data by researchers, the NHS and third parties.

Recent advances in understanding of ageing processes, alongside rapid improvements in systems to analyse and make sense of large patient datasets have raised the possibility that a revolution in the diagnosis and treatment of ageing-associated illness might be just around the corner. We welcome this review, which will help set the scene for the forthcoming Data Strategy for Health and Social Care and the recognition within Government that efficient and responsible use of health data could be transformational for huge number of patients. On announcing this rapid review, the Secretary of State for Health and Social Care, Matt Hancock, said:

“The pandemic has demonstrated just how important health data is. Ensuring that researchers have secure, transparent and ethical access to health data has the potential to transform health and care and save lives.”

Health data is fundamental to the success of UK SPINE and Geroscience

This transformative potential is one of the key reasons for developing the UK SPINE network. The ultimate goal of which is to treat the negative affects of ageing not as a series of individual illnesses, but through the wholistic approach of Geroscience. Geroscience seeks to look beyond individual disease states and instead treat the gradual degradation of underlying biological processes that ultimately lead to development of age-related ill health. This could mean going from being treated for multiple different conditions (called multimorbidity), with a variety of different and sometimes conflicting medical interventions (called polypharmacy) and even then only once in ill health, to pre-emptive treatments that target the root cause processes as they start to fail, potentially long before any symptoms are evident. The benefits and impacts to all of us as part of a rapidly ageing society could clearly be revolutionary.

This ambition has previously been summed up by UK SPINE researcher, Professor Janet Lord (University of Birmingham):

“We don’t believe that ill health should be an inevitable part of growing old. By understanding what happens…as we age, we want to break that link between ageing and illness. You could say we want to ensure people enjoy a long, healthy life and a short death.”

However, to reach this ambition, we must be able to identify suitable biological targets and develop effective medicines to repair or modify these targets rapidly and with confidence and crucially, be able to monitor how these biological processes change in response to new treatments. This requires high-quality, complete and well harmonised datasets that are representative, not only of those suffering from or at acute risk of ageing-related disease, but of the whole population. Covering all ages, ethnicities, social backgrounds and every type and combination of health states and illnesses. This is especially important in ageing research as deprived and marginalised groups are more likely to spend a greater proportion of their later life in poor health.

The challenge ahead

UK SPINE has already made great strides in understanding the potential for new treatments that could improve healthspan (i.e. the number of years lived in good health). The network’s portfolio of Strategic Projects includes high-throughput analytics of existing BIOBANK data to investigate previously under-explored therapeutic targets. There is also potential to better understand already available evidence on markers of multimorbidity, which has been examined by a Knowledge Exchange project led by Professor Carl Heneghan and Dr Elizabeth Spencer (University of Oxford). Moving from concept to clinic, the Bridge Projects include work to compare patient data on biological processes such as senescence with patient outcomes.

The rapid review is being led by Dr Ben Goldacre, Director of the DataLab (University of Oxford) who recognised both the value of existing health data and the step-change that could be brought about by its effective use:

“The UK has a phenomenal resource in its raw data, and its people. Our challenge is now in the final lap: we need to find safe, secure, collaborative and efficient ways to turn that raw data into insights and action, to improve patient care for all. There is a wealth of expertise around the country, much of it untapped.”

Ben has also contributed significantly to public engagement with science and data. Understanding the needs of patients and the public in relation to the use of health data will be crucial for improvements in healthspan to be successful. After all, new treatments for ageing-related illness can only ever be effective if patients are willing to take them. A concerted effort will be required across the field of ageing research to ensure that the public is meaningfully consulted, involved in and are able to access and understand how and why health data might be used. For example, a panel of patient attendees at the UK SPINE 2020 conference expressed feelings ranging from hope and excitement to disbelief and cynicism in a discussion about potential treatments targeting the underlying biology of ageing and the projects to develop them. We are now using our patient work to date to kickstart a programme of engagement and involvement and we welcome input from network members, patient-facing organisations and members of the public to help shape this because we know that if we lose sight of patients, our efforts risk being for nothing.

If you would like to get involved or talk to us further about ageing research or health data contact Patient and Public Involvement Manager, Leah Fitzsimmons.