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.

But 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 data-sets 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. For example, the Public Health Observatory has periodically conducted a Programme Budget and Marginal Cost Analysis, which has benchmarked every local authority based on how much it has spent in a programme budget category. NHS Rightcare has also been tasked with helping CCGs and STPs to identify where they could improve outcomes and save money.

Unfortunately, however, Trusts do not have access to Hospital Episodes Statistics (HES) data in order 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 in order to gain deeper insights into how all services are currently performing, and where problems and inefficiencies exist.

Obtaining this kind of insight could bring major cost-savings. For example, a National Review of Elective Orthopaedic Services in England in 2015 found there were more than 200 different types of implants being used for hip replacements and their prices varied between £761 and £3,669 per implant. The most successful implant for the over 65 age group of patients was a cemented implant which had a price range of between £595-£894. However, fewer than 40 percent of units were using these and the variation in usage was between five and 95 percent. The report, which has been coined: ‘Getting It Right First Time’ (GIRFT) has recently been followed by a similar styled report on general surgery, which again demonstrates the use of data to try to understand the impact of unwarranted variation on services.

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 data sharing 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. For example, the South Nottinghamshire health economy has already recognised the need to integrate data from all sides.

It has commissioned an international company called Centene to create a data lake, that will comprise all the healthcare data from all the different patient touchpoints from primary and hospital services, to care homes, charities and community pharmacies, as well as real-time data from ongoing patient care. It may even be possible for patients to upload data captured from wearable devices.

Sir John’s bid to build regional hubs into national population level data would make it easier to interpret data in new and potentially more insightful ways, such as those envisaged by Sir Muir Gray in his ‘Better Value Healthcare’ philosophy. Sir Muir believes that value for money and equity in the way that services are provided can be better achieved within the NHS by focusing on populations as they are defined by a common symptom, condition or characteristic – e.g. breathlessness, arthritis, or multiple morbidity.

The true cost of care

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 data-sets.

To thrive in this new, joined up, data-driven environment, pharma must consider how it can add value to a patient’s journey from diagnosis to end of life care. This could include everything from ensuring that medications are easy to administer to providing better support on adherence.

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.

Pharma can play a key role here by talking about its successes to date in utilising patient data to improve outcomes. In tandem with this, the NHS needs to be willing to be transparent about how it is working with industry.

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