Optimising health data in the UK

Maximising the UK’s potential as a leader in health data “is non-negotiable” – but how do we do so within the framework of disparate sources and multiple accountable organisations, all while maintaining public trust?

Like most developed nations, the UK faces significant long-term challenges to the sustained, efficient delivery of healthcare.

Using health data to improve quality, develop precision medicines and drive down costs, could help overcome issues such as aging populations and the increasing price of medicines.

But while the sector is well aware of the potential, and policy makers have invested in programmes and initiatives designed to embrace change, a cohesive strategy is lacking, says a report from Imperial College London’s Institute of Global Health Innovation.

“The UK is the best-placed large economy in the world to use its health data assets for transformative health, scientific and economic impact,” says Lord Ara Darzi, co-director of the Institute, and visiting professor Lord James O’Shaughnessy, in a foreword to NHS data: Maximising its impact on the health and wealth of the United Kingdom.

“The health service’s reputation has been dented by the fall-out from well-publicised failures like that of Care.Data in 2014”

“Good progress is being made and all levels of society – including the government, the NHS, academia, charities and industry – are committed to this agenda. However, there is a risk that this is being done in a piecemeal way. No single organisation is unequivocally tasked with leading the way, and the endeavour has lacked a comprehensive strategy.”

Overarching strategy

The publication, based on interviews and workshops with sector experts from government, the NHS, academia and industry, among others, calls for a “single overarching framework to guide the proper use of the UK’s health data assets.

“The goal of any strategy must be to deliver benefits to people in the UK, and specifically to the NHS. Benefits to other parties will come as a corollary and are important considerations for the strategy,” it says, adding that success would be guided by the adherence to three main principles.

Patients must feel a “sense of agency and control” over what happens to their data; health data must only be used in safe, secure, legal and ethical ways; and there “must be a concerted effort to distribute benefits to people across the UK”, it says.

Taking control

Over the last 15 years, policy makers have taken steps to realise the opportunity and reap the rewards that will undoubtedly flow to the country that “cements its position at the head of the pack”.

The formation of the UK Biobank, various disease-specific registries, and the Global Digital Exemplars programme, as well as organisations such as NHS Digital, Health Data Research UK and Genomics England, for example, all demonstrate the will to innovate.

Most recently, Matt Hancock MP, the Secretary of State for Health and Social Care, created NHSX and tasked it with providing an overall strategic direction for the digitalisation of healthcare.

But while such moves are encouraging, they do not constitute an overarching plan, says the Imperial report.

“There… remains confusion around which organisation is ultimately responsible for developing and delivering the vision for maximising the potential value of NHS data for people in the UK,” it says.

Any strategy, it goes on, must not only cover the separate NHS systems in each of the four home nations, but also include a range of policy making organisations.

“It needs to involve senior decisionmakers across government and especially the NHS, [all] united behind an official narrative that all stakeholders, including the public, clinicians, the NHS, government, academia, charities, and the life sciences and technology industries, can support.

“We need a national conversation with locally delivered engagement involving all stakeholders to address these issues. This topic is too important to solely involve senior government and NHS leaders.”

Public trust

Key to success is ensuring the sector has the input, support and trust of the public, as the NHS’ status as a possible global leader in this area is only partly based on its access to a comprehensive, longitudinal dataset of 65 million people.

“The NHS occupies a special place in the psyche of the British nation. It is one of our most treasured institutions, and while trust in other parts of the national infrastructure has fallen, the public still overwhelmingly believes in the purpose and benefits of our health service,” explains the report.

Despite this, the health service’s reputation has been dented by the fall-out from well-publicised failures like that of Care.Data in 2014.

Says the report: “The salience of data issues among the general public is rising, as is scepticism about the use of such data by private sector organisations. Proving that NHS and other health data are being used to benefit the wider public is critical to retaining trust.”

Collaboration and transparency are essential, then. The report recommends working with the public and clinicians to uncover what they believe to be acceptable uses of health data, the utilisation of “citizen juries” and a national communication strategy that demonstrates the real-life value of health data.

“We must be much more transparent about current uses. We need a dialogue to ensure people’s views and concerns are reflected in decisions about which uses of data, and benefits generated from these, these are acceptable or not.”

All this will take considerable investment – the report estimates tens of millions over the coming years – but the price of doing nothing is considerably higher for all involved.

“Get it right, and we can generate enormous value for patients, clinicians, taxpayers and the economy. Get it wrong, and the public will withdraw their support,” say Lord Darzi and Lord O’Shaughnessy.