Wales is at the forefront of efforts to use health data in research to advance our health and care. At the heart of this is our world-class, world leading health centre, a cornerstone of UK-wide health data research efforts. It’s the engine for Wales’ project to improve our health and NHS for generations to come, and a wellspring of innovation changing how we understand social effects on health and how we evaluate clinical trials.
As the NHS turns 70, we explore the Secure Anonymised Information Linkage (SAIL) databank’s pioneering approach that makes over two billion anonymised person-based records available to researchers, and has generated tools and resources at the forefront of UK and global health research. Its continuous innovation has seen it linking social and health data, to meet the demand of researchers who are increasingly seeking to understand social influences on health.
We also take a look at HealthWise Wales, the nation’s project to better understand our health and ways of improving it and our NHS, collecting data from the population of Wales to help develop the evidence-based medicine of the future, and to support bespoke research studies.
A history of life-changing research
Established in 2007, SAIL holds a wide range of anonymised health, social care and related data about the entire population of Wales. It makes the data available to approved researchers through a secure data sharing platform, allowing them to answer questions about influences on our health, and potential new approaches to care.
In its first ten years it has been used by over 350 researchers in 250 research projects, and by UK-wide organisations like Cancer Research UK, Asthma UK and Alzheimer UK, focusing on areas such as reducing inequalities, managing chronic conditions, emergency care and the burden of disease.
By enabling important questions to be answered that could not easily be addressed otherwise, if at all, SAIL has been at the heart of research leading to recommendations for improvements to policies and practice.
Internationally recognised innovation
Beyond the data itself, SAIL is internationally recognised for innovative data governance and ground-breaking technological solutions in areas such as the anonymisation of data, linkage of data from multiple sources, and how they combine these technologies to address large-scale health research.
Those solutions are also at the core of the UK Secure e-Research Platform (UKSeRP) which is an advanced, high-powered, service delivering both data-management and data-sharing technologies.
UKSeRP connects existing collections of routinely collected data, allowing researchers identify patterns across entire populations, gaining a broader picture and greater clarity than otherwise possible.
Professor Belinda Gabbe, head of pre-hospital, emergency and trauma research at Monash University in Australia, said: “SAIL has set the global benchmark for innovation, security and quality of population health research based on linked data records. The benefits of SAIL will be seen for generations to come.”
Release of this technology to the wider research community has resulted in the creation of data resources, such as the Dementias Platform UK Data Portal, and could support the development of many new data resources for researchers in the future.
Paving the way for better data
Public health researchers have sought to understand social influences on health and wellbeing, and SAIL is leading the way in linking large sets of health and social research data.
Collaborating with the Administrative Data Research Centre Wales, a focal point for data-related social research in Wales, SAIL is working to bring together data sets from health and other public policy areas.
That Administrative Data Research partnership is now seeking further funding that will increase the amount and richness of health and other data available to researchers.
An integrated platform will capture much more information about the health and wellbeing outcomes that actually matter to people, so that this information can be used to prioritise services, based on a full picture of their quality and value, not just cost and volume.
Dr Dermot O’Reilly, Director of ADRC-Northern Ireland at Queen’s University in Belfast, said: “If you want to know what data linkage in the UK might look like in future decades, take a look at where SAIL is currently.”
These resources have the potential to support transformational change within NHS Wales, enabling investigation of the broad range of factors which impact upon the health and wellbeing of the population and how these can be utilised to reduce the resource burden on health and care services.
Revolutionising clinical trials
Researchers are also finding new ways of using data to improve the way they work. Anonymised routinely collected data that is linked in SAIL could be the key to the future of randomised clinical trial follow ups.
Typically, these trials are often focussed on the immediate clinical benefit with limited focus on long-term follow-up, limiting our understanding of long-term benefits or effects.
Now, a study using SAIL data has shown the databank’s potential in tracking of trial participants, enabling monitoring of medical interventions and health outcomes, giving new insights into population health.
With patients’ consent, data analysts can match patients to their records and access data quickly. As a result, the cost of follow-up using routine data is relatively small and does not increase with the number of participants.
The nation’s health
Funded by Health and Care Research Wales, HealthWise Wales is the nation’s project to improve health and NHS services for generations to come, and is largest research study of its kind ever in Europe.
HealthWise Wales is regularly collecting data from the population of Wales to help better prevent and treat long-term health conditions such as heart disease, diabetes and dementia. Collecting data through online surveys, it aims to involve and engage everyone in Wales over the age of 16 in research.
Dr Shantini Paranjothy, scientific lead for HealthWise Wales, said: “By answering some short questions about health, lifestyle and wellbeing, participants will help us understand how to prevent illnesses, manage long-term conditions and improve the health of future generations.”
Public views play an important role in forming the public policies that create more useful future health care delivery plans, and HealthWise Wales allows researchers to collect the specific public data that they need.
HealthWise Wales helped a recent study to collect data on public attitudes toward death and dying by promoting their survey. Researchers aimed to gain 600 responses, but through HealthWise Wales they received over 2,200.
HealthWise Wales has access to a wealth of public data that can support bespoke research well into the next 70 years, and can provide access to data researchers could not have gotten otherwise.
So, what’s next?
With the value of and potential of rich data in transforming health and care clear, and a long track record in cutting edge developments, there is no doubt that SAIL is set to continue its leading role in research, UK-wide and internationally.
Wales’ track record in utilising this cutting-edge technology and undertaking ambitious research through HealthWise Wales is pivotal to advancing our health and care long into the next 70 years.