Health data experts call for government investment to fight future pandemics

Northern health data experts have called on the government to invest in local data sharing to help recover from COVID-19 and prepare for future pandemics.

Trusted health data networks set up by the Northern Health Science Alliance (NHSA) Connected Health Cities (CHC) project now exist in the North of England and could be used to flow data to help local communities take swifter, more decisive actions in tackling crises such as COVID-19.

Dr Séamus O’Neill, chief executive at the NHSA, said: “CHC is a proven model of work that has gained the trust of millions of people across the North and paved the way for 10 million shared health data records.

“As lockdown measures start to become localised, the importance of regional data sharing innovations should be recognised, and invested in, by the government.

“CHC gave us ways to work locally for regional and national benefit. By applying this learning and investing in the next steps of the project, we can help ensure the health and social care systems are better prepared for future health crises and in a position to react and respond quickly based on the needs of the people and systems locally.”

Academics and clinicians from across the North of England, who spearheaded the CHC programme, are calling for investment in the next phase of the local data sharing project which will build a resilient network of civic data co-operatives to fight future pandemics.

The government-funded CHC pilot programme, which came to an end in March, put people at the heart of how their data was used. By building trust with both patients and health and social care organisations locally, the programme, which was delivered by the Northern Health Science Alliance (NHSA), was successful in linking 10 million health records in the North, creating at least £30 million of investment and has shown early indications of at least £150 million worth of cash savings in the North of England’s NHS and social care every year.

Professor Iain Buchan, executive dean, Institute of Population Health, University of Liverpool, architect of CHC, said: “Civic partnerships of NHS, local government and academic organisations are sufficiently close to resident communities to earn their trust for sharing data at scale, to analyse the data in context and to understand how to act on the intelligence. When these partnerships are sufficiently large – around 3 million population coverage – they achieve economies of scale in data and analytics without breaking beyond the essential diameters of public trust, contextual understanding and manageable actions – COVID-19 has demonstrated the need for a national grid of these civic data cooperatives.

“There was a disconnected early response to COVID-19 with NHS, public health and local government agencies out of sync, relying on national information systems that didn’t talk to each other. More recently, I have seen localities ramping up integrated data and intelligence to improve system-wide responses to COVID-19, especially in North England drawing on CHC experiences and prepared communities.

“For better pandemic preparedness there needs to be a national grid of intelligence-led civic health and care systems – each with a critical mass of data analysts working together to understand their local system, combining NHS, public health, social care, research and other perspectives. Such a grid would afford distributed resilience for the UK, and a more powerful health data/tech innovation network.”

The call comes following an online NHSA roundtable with leaders in the NHS, public health, academics and policymakers to discuss how the CHC health data sharing project across the North of England could help inform the national response to COVID-19.

The group is calling on government to invest in the next phase of the CHC programme which will focus on building a network of civic data co-operatives (CDCs) to scale up and roll out the value delivered and would allow data and data scientists to be mobilised at critical mass in each regional health system to deliver real-time evaluation and smart implementation of innovations.

Professor John Ainsworth, professor of health informatics, The University of Manchester and director of CHC Hub, said: “CHC was incredibly successful at bringing organisations together across the health and social care system in a collegiate manner and gaining the trust of the people they serve. There is a real opportunity to capitalise on this future by acting locally, building trust, and building networks so we can form a collective that’s greater than the sum of its parts.

“We have already demonstrated that the CHC model works; a data driven approach to service design and quality improvement delivers benefit for providers and for patients. With follow-on investment we can accelerate it and create even more, lasting impact. The time is now for government to move away from the national ‘top down’ approach and to invest in locally-driven models.” 

CHC brought together 20 Acute NHS Trusts, over 500 GP Practices, 10 universities and the northern Academic Health Science Networks (AHSNs) to innovate and improve care through joint working from March 2016 to March 2020.