Life-Saving Data: Why Health Data is a Key that Unlocks Healthcare Innovation
The UK has a unique and world-leading combination of a thriving science and innovation sector, a public health service, a rich fabric of medical research charities and a vibrant biomedical industry. But maintaining this position against the highly capitalised global competition will require these groups to adopt new joint approaches and utilise our national resources, including consented medical data.
As the House of Commons Science and Technology Committee examines the policy and public debate around the use of personal health data, it is vital that we explore the pressing issues that need to be addressed for the betterment of patients, and the strategic UK life sciences industry - which generates an annual turnover of more than £70 billion, including £30 billion of exports. This starts with data.
Data has always fueled the engine of innovation in healthcare - in the form of scientific papers, clinical findings, or open-source information. Without access to patient data, our inventions can never become more precise and, therefore, cannot become more effective.
A holistic understanding of data is delivering dividends, not just for UK patients, who access world-leading medicines and treatments, but also for the UK's economy.
Our consented patient data can be seen as a national asset and a critical resource for UK innovators. This data could also provide a source of national return through a combination of data access fees - providing short-term funding for our health services, future precision medicines, and a successful UK-owned and run high-tech sector - creating sustainable and economically significant employment opportunities that deliver value to the Treasury for national benefit.
As the House of Commons Science and Technology Committee continues its Inquiry into striking the right balance between the use of personal health data and privacy concerns, some experts are calling for more efficient ways to support innovation and the development of new medicines and treatments.
Quite rightly, stringent rules exist to protect personal patient data in the UK. However, in a world where the quantity of gathered data is ever-increasing, experts are clear it is essential to strike balance when it comes to accessing data if the UK is to maintain its global leadership role in the biomedical sciences.
One of the organisations giving evidence to the Committee’s Inquiry is the Medicines Discovery Catapult (MDC). Part of the Catapult Network, MDC is an independent, not-for-profit R&D provider reshaping UK drug discovery for patient benefit, transforming great UK science into better treatments through partnerships.
It provides on-the-ground support to those developing the lifesaving treatments of tomorrow and sees firsthand the barriers that industry, including SMEs and service providers, face in accessing health data.
Professor Chris Molloy, CEO at MDC, is clear that whilst privacy protections are paramount - consent and engagement are the starting point - increasing the flow and availability of data is also essential if the nation is to develop the new treatments that will ultimately save lives.
“Medical advances and new drug development are a data-led science,” Professor Molloy tells The House. “It is the basis of everything that the biomedical sector does – whether that is developing new treatments or identifying people at risk of falling ill.
“However, for many companies, the processes for accessing that essential data are cumbersome, complicated, and slow. That impacts the rate and scale of developing vital new ‘precision’ healthcare products and services”
The key challenge UK biomedical innovators face is ensuring they have access to accurate, timely, and consistent datasets that can support their inventions. As technology advances and datasets grow, this is becoming an increasingly significant problem for the sector.
“The quantity of data that we all generate is growing exponentially. Finding ways to harness that data will be transformational in how we identify and treat illnesses.” Professor Molloy explains.
“Nowhere was the importance of data in healthcare responses more evident than during the Covid-19 pandemic, where the crisis enabled the nation to combine consented data effectively and rapidly.
“UK universities, the NHS, medical innovators, and technology providers collaborated to protect the public. From the national Lighthouse Lab network, which MDC helped to establish, to the test and trace lateral flow and mobile apps and Operation Moonshot, data was at the heart of the nation’s response. Building on that foundation, individuals are now much more accustomed to taking responsibility for their own health and reporting their personal data, by way of testing.”
Professor Molloy believes one of the key lessons policymakers learned from the response to Covid-19 was the value of medical data as a national asset. However, he fears that unless that lesson is now applied to the wider sphere of medical research, opportunities for potentially lifesaving treatments could be missed. Not only will this impact health outcomes but could also disadvantage UK businesses operating in a global marketplace.
“At the moment, the data that could potentially produce effective new treatments is simply not as accessible as it should be,” he tells us. “Many of the companies that we work with - particularly SMEs - are now accessing their innovation data from outside the UK in weeks, rather than in the UK where it can take months or years.
“In a rapidly moving sector, this is leading to a loss of competitive advantage for UK biomedical companies. Without using every ounce of fuel available to us, we remain a choked engine, allowing the cutting-edge breakthroughs and medicines of tomorrow to be discovered and developed in more purposeful areas of the world – to be paid for in future by our health systems for our patients with our taxes.”
Government, medical research charities, and the wider health sector need to engage the public in an active discussion about the way that anonymised medical data can benefit the nation.
Echoing the need to draw upon medical data to accelerate health advances, Lord Mitchell who sits on the upper chamber’s Science and Technology Committee, said:
“If the pandemic has taught us anything it is that medical data of the population is crucial in assessing major medical issues. In the UK we are lucky. Because we have a unified NHS and because it goes back nearly 75 years we have a treasure trove of patient data unmatched by others. This data when coded and refined enables algorithms to be produced which can help win the war against disease and abnormalities.
“The UK has been in the lead in using this national data, but we must make sure that unnecessary bureaucracy doesn’t restrict our rapid adoption of this life enhancing technology. Privacy needs to be protected, but not used as an excuse for inaction”.
The solution, according to those in the sector and to some voices in government, is to adopt a system that assumes anonymised data sharing by default. This would simplify access to data without leading to a decrease in privacy.
However, data access by default will only work if the UK public is confident their data will not be misused and if they can tangibly see the real medical advances and national value it delivers. Molloy says, “One tangible way would be the development of a Sovereign Health Fund to receive industry fees for accessing UK health data, which would be ploughed straight back into NHS research and health ‘Good Causes’. This model of collective giving from the National Lottery has shown how citizens can be helped by commercial endeavours. Imagine if a Sovereign Health Fund was building cancer wards or providing remote diagnostics vans in supermarket car parks. This is not selling our data. It is valuing it and using it for good.”
Commenting on the balance between privacy and the potential advantages a Sovereign Health Fund could unlock, former health minister, Lord Warner, added:
"For the most part the public accepts the use of their data, suitably anonymised and with appropriate consents, for life changing medical research…a Sovereign Health Fund could be established to secure for the NHS a share of commercial profits from medical research using NHS data. This would benefit patients, the NHS and the UK life sciences sector."
If that is to happen, then government, medical research charities, and the wider health sector need to engage the public in an active discussion about the way that anonymised medical data can benefit the nation.
Dr Hakim Yadi OBE, who is the CEO of Closed Loop Medicine, believes that the public could be engaged by channeling the country’s reputation when it comes to blood donations:
“Here in the U.K., we have a phenomenal culture of giving and donating; we donate our blood on scale and organs to those in need. What if we thought of providing our data to the healthcare system and for research innovation as a donation? Blood donation saves many lives on an individual basis, but data donation could save millions. If we were to become a nation of health data donors, imagine the opportunity.
“We could start to capture additional data, including what happens between doctors visits, such as the impact and side-effects of the drugs we take and the changes we make to our lives to improve our health. If we were to capture these data points, we would have a better picture of an individual’s care experience enabling us to provide more integrated and personalised dose optimised therapy.”
Speaking from his experience as the former Health Secretary during the pandemic, Matt Hancock, said:
"It's hard to think of anything more important for the future of healthcare than using data effectively. Modern data allows the discovery of new medicines and the saving of lives like never before. The UK has the best opportunity in the world to make the most of this, thanks to the universal NHS.
“The NHS has made great strides in the last few years, best exemplified by the vaccine effort, where we led the world because of our smart use of data. But too many barriers still hold us back - and it is vital for the health of the nation that we break those barriers down."
Meanwhile, Lord Bethell, who served as Parliamentary Under Secretary of State for Technology, Innovation and Life Sciences at the Department of Health and Social Care during the pandemic, added:
“I know from my own experience as the minister during the pandemic the critical value of data. It was critical for understanding the progress of the disease through society. It powered the research necessary to design vaccines and therapeutics to fight the disease. And we need good data for the vaccine and therapeutic roll-out plans that worked so effectively.
“Given the huge impact of data on these successful surveillance, research and deployment programmes, it is heartbreakingly sad that we are not learning these lessons and using modern use of data to improve the productivity and effectiveness of the NHS. I just cannot see how we are going to put the NHS back onto a firm operational footing if we do not change our attitude to data.”
Molloy is optimistic about the debate, ensuring the voices of industry and patients are heard. “If the British public understands that their anonymised data is being used by national inventors to protect others, then everyone can contribute positively to the future health of our nation.”
For more information on MDC, please visit: https://md.catapult.org.uk/
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