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Shining a light on the true cost of patient care

Sue Thomas and Paul Midgley, of Wilmington Healthcare, explore how the proposed national patient data sharing scheme would change the NHS

When Sir John Bell recently published his recommendations for the Life Sciences strand of the Government’s Industrial Strategy, he said that the NHS’s structure gives it data sharing opportunities that cannot be realised in many insurance-based healthcare systems.  

His vision for a national patient data sharing scheme that would give researchers, including private companies, faster access to “de-identified” patient data from millions of records, would transform the NHS’s silo-based system, exposing anomalies in patient care and revealing the true cost of care.

While industries ranging from retail to insurance have been successfully harnessing big data for years to improve products and services, the NHS has struggled to capitalise on complex data. This is partly because primary and secondary care datasets have not been linked, and patient data from social care, charities and other related fields are also stored in silos.  

In recent years, there has been a clear move towards gathering data within the NHS for benchmarking purposes. Unfortunately, however, trusts do not have access to Hospital Episodes Statistics (HES) data to benchmark themselves against each other.  Furthermore, they do not have the capacity to drill down into the data that is currently available to them to gain deeper insights into how all services are currently performing, and where problems and inefficiencies exist. 

As the NHS struggles to afford to capture, procure and analyse its own data, there is a huge opportunity for pharma to help shape the way that NHS services are delivered by gathering this data themselves, analysing it and sharing the findings with CCGs, NHS trusts and new emerging organisations.

Indeed, if it could be proved that changes could improve patient care and drive down costs, pharma may be able to present an initial ‘case for change’ for a particular patient pathway, which could then lead to a detailed business case being developed by a multi-disciplinary group.
This can help pharma build relationships with the NHS in an increasingly tough economic environment.

How would a national patient data sharing system change the NHS?

Sir John’s proposals would involve a major escalation of the data collection and integration schemes that are currently underway in some parts of the country, so that proposed regional data hubs could ultimately feed into a national data lake.  

If regional data hubs and a national data lake were created across the UK, then anomalies in patient care and outcomes, and their financial impact, would become increasingly apparent. This would lead to a greater focus on delivering optimal patient journeys – like those already defined by NHS Rightcare for various conditions.

To manage these kinds of costs, Sustainability and Transformation Partnerships (STPs) are likely to integrate their budgets into an Accountable Care System (ACS).  The ACS model involves a group of providers being responsible for all the healthcare needs of a defined population in order to improve outcomes and reduce costs across a defined area. Joined up data systems measure the inputs and outcomes necessary to implement new outcomes based capitated fee contracts - the fundamental building blocks of accountable care. They mean that costs that were once hidden away among a variety of different providers will be very visible within regional population datasets.

The UK’s potential to become a major data centre

The advantages of gathering and integrating data from multiple touchpoints across the UK are immense and they could eventually see the NHS used as a laboratory for international organisations to test theories and measure costs across a wide variety of care settings to support the introduction of new, innovative technologies and treatments.

They could also allow accelerated access products, such as cancer immunotherapy drugs, to generate real world data quickly to support clinical trial findings. This could give costly, but highly effective drugs a competitive advantage, if it could be proven, through real world data, that they will save money in the longer term.  

However, before this can happen, the Government has a huge reputational hurdle to overcome, following the debacle. It must earn patients’ trust about the use of confidential medical data and reassure them that third parties can be trusted to use data responsibly.  


The NHS is one of the few health systems in the world that is truly national. If it could amass and share patient data from a full range of care providers in different settings, it would indeed have the potential to become a global health information leader.  

There is, of course, a clear gap between where the NHS is now in its data gathering and interpretation capacity and where it wants to be. To bridge this gap, there is a valuable role for pharma to play in supporting local trusts and CCGs to analyse and interpret the data that they currently hold, and in publicising its success in harnessing patient data to improve care.

Pharma also needs to be thinking ahead about how its products and services can improve outcomes and reduce costs, as the NHS moves towards a system where it may soon be able to evaluate the industry’s worth more accurately through the power of patient data.  


Paul Midgley is Director of NHS insight and Sue Thomas is CEO of the Commissioning Excellence Directorate, both at Wilmington Healthcare. For information on Wilmington Healthcare, log on to

22nd November 2017


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