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Want to transform healthcare in the UK? Data is key

By Adam Manhi, Head of Network and Commercial Partnerships at Flatiron Health UK

When I joined Flatiron Health UK more than three years ago, I was incredibly excited about the prospect of working for a company dedicated to collaborating across the healthcare ecosystem to drive innovative medical research and to provide patients – including my friends, parents, and children – continually improving care.

Healthcare systems are facing real challenges—capacity and resource issues are well documented, and in diseases such as cancer, the UK continues to fall  behind countries of comparable size and wealth. For example, research published in The Lancet, found that patients in the UK are less likely than those in other comparable countries to receive chemotherapy or radiotherapy at all or in a timely way.

How can data help?

For healthcare ecosystems to overcome these challenges, institutions must focus on adopting new technologies to improve efficiency, productivity and, most importantly, patient’s lives.

Data is the key to unlocking innovation—whether it’s training AI to read hospital scans, learning from our DNA to prevent disease in those at risk, or getting the right treatments to the right patients at the right time.

Data also enables us to learn from the experiences of all cancer patients—no matter their background—and support efforts to reduce health inequalities.

However, the data on a patient's journey across a healthcare system is stored in different locations, systems, and formats. In cancer care, this is compounded by a large volume of unstructured data that is very hard to analyse and interpret, particularly at scale. This makes it largely unusable for use in improving research and care. Tackling this problem requires deep, cancer-specific expertise from a clinical, technological and operational standpoint.

Helping the UK learn from health data

This is where health data companies come in.

At Flatiron Health, we focus specifically on cancer data and can turn unorganised patient information into curated, research-ready anonymised datasets that can be used by the hospital systems and researchers, in academia and industry, to accelerate cancer research, drive efficiencies and improve patient care. Our approach has led to men with breast cancer being able to access life-extending drugs that were previously only available to women; bowel cancer patients being spared unnecessary extra doses of chemotherapy, improving their quality of life and valuable therapeutic advances becoming available to patients in need. We have been working with NHS trusts and health data policymakers, and are proud to have partnered with Leeds Teaching Hospitals NHS Trust to gather, anonymise and use their cancer patient data to inform research and patient care.
Although progress is being made in the UK, the utilisation of health data is one area where the UK can do more to lead the way globally.
From my experience of working across the industry  and with policymakers, there are three key areas to address that policymakers should be prioritising to achieve this. These changes could have a big impact on accelerating data utilisation (and therefore innovation and productivity):

1. Planning/Getting strategy and policies right

The importance of learning from data is acknowledged by leaders across the devolved nations – each with data strategies in place – but progress has been slow. Curating and integrating data across  healthcare systems requires immense expertise and resources, and may not be feasible for a long time – without external expertise and support.

Allowing providers the flexibility to continue to take a bottom-up approach and adopt public-private data partnerships that support their specific needs and the needs of the local population now – with, if needed, a series of rules, checks and guidelines so that only vetted or trusted organisations are allowed to partner.

The Government should work with NHS England leaders, clinicians, and data specialists to refine its health data policies and processes. It is crucial that national policies and processes allow for – and do not hinder – the utilisation of health data.

2. Overcoming operational challenges

Bandwidth for the adoption of innovation is limited by capacity and resourcing challenges. Practical support must be available to support data collaborations and the adoption of new technology.

NHS England could look to develop an operational toolkit to support trusts to implement public-private data partnerships, as well as promoting existing guides, and offering training, across NHS trusts.

There should also be provision for greater flexibility in accessing temporary resources, – financial, technical, or personnel-based (including when funded or provided by commercial partners) – to facilitate critical ongoing programmes of work in implementing new technology, irrespective of local or national budget constraints.

3. Improving public trust

Data about a person’s health feels extremely personal and it’s so important that the healthcare ecosystem and health data companies take their responsibility seriously, to not only design processes to safeguard personal information, but to be transparent and inform patients about what they’re doing with their data and why – and how patients can opt out if they still really don’t feel comfortable.
Previous attempts to organise NHS health data have been met with controversy – both and General Practice Data for Planning and Research scheme (GPDPR) ended up on the cutting room floor after media and public concern. Although progress has been made in learning from previous mistakes, there is still more to do.
We would like to see a greater focus on communication with regards to the use of health data, the benefits of its use for research and how it should be protected. This would benefit all public and private organisations working to transform research and care through data.

At Flatiron, we make sure patients are involved in everything we do,leading to the successful launch of our partnership with Leeds Teaching Hospitals NHS Trust. We will also be announcing further partnerships in due course.

We stand ready with our colleagues across the health technology sector to support the Government and NHS in their endeavour to overcome challenges, and utilise its wealth of data to accelerate the adoption of technology to boost productivity and patient outcomes.