Combining patient data for better outcomes

Medical data: Rich observational data source

Steve Bradley, Group Managing Director at Cegedim UK, inspects combining a rich observational data source with private, public sector and research bodies’ resources leads to better outcomes.

The NHS is being transformed through the digitisation of healthcare services and more insightful use of patient data. Over the last five years, research has shown that data analytics could save the health service anywhere between £16.5 billion and £66 billion annually, while a recent market report valued NHS data at £9.6 billion.

Despite these financial benefits, it can be rightly argued that the true value of healthcare data lies in patient outcomes. Good data can power better pathways and safer, more effective models of care. It is our ability to harness this traditional information source through technology and sophisticated analytics that will drive better outcomes and more sustainable models of care. ‘Aggregated Patient Data’ could, therefore, be a key component of healthcare transformation.

“Opportunities to extend the secondary use of patient data to drive health improvements are increasing”

Data drives better healthcare

The NHS collects an immense amount of data across multiple touchpoints, with the most data-rich being clinical consultation, where around 6 million GP appointments a week and almost 120 million outpatient appointments a year occur in England alone. This patient-doctor interaction can offer tangible value when the data is anonymised, collected and analysed at scale. Indeed, NHS England’s ‘Next Steps on the NHS Five Year Forward View’ highlights the ‘valuable opportunities’ of ‘longitudinal data’ to drive better healthcare, citing the unique role general practice plays.

Longitudinal data can provide a real-world picture of patient journeys, treatment pathways and health outcomes. It can help NHS organisations – both locally and nationally – measure variation and see how clinical decisions impact public health. And it can inform decision-making in a range of crucial areas from resource planning, pathway design and medicines optimisation to disease management, NHS commissioning and drug development. The potential for its application is enormous.

Over the years, health stakeholders including clinicians, academics, health economists and the life sciences industry have applied longitudinal patient data to help understand disease, improve diagnosis, and assess pathway and policy effectiveness. Moreover, as technology continues to evolve, opportunities to extend the secondary use of patient data to drive health improvements are increasing.

For example, aggregated patient data is one of the most valuable sources of observational data to determine the real-world impact of new medicines. Real-world observational studies have become fundamental to give robust and meaningful insight, and measure the clinical and cost effectiveness of new therapies. The shared benefits of utilising these forms of data are profound: patients gain access to life-changing therapies, doctors can give their patients early access to the best treatments, and life sciences companies obtain evidence to secure regulatory approval.

Unlocking the full potential of data

In addition to longitudinal patient data, new data streams are emerging that are giving new insight – from understanding patient populations, to local variation and unaddressed needs. Deeper and more complex data sets are being created through the combination of information captured in patient registries, biobanks and clinical trials networks with electronic patient records, unlocking clearer definitions of what healthcare ‘value’ looks like in the real world.

The rapid increase of data at macro-level is also transforming the way policymakers and healthcare leaders plan and manage NHS services. Proposals to broaden NICE’s use of data and analytics are, for example, currently at the consultation stage, but they include an ambition to unlock and exploit the ‘full potential of data’ from a range of sources including electronic patient records and primary care datasets.

As clear as the transformative value of this data might be, there are significant considerations over its usage. The aggregation and use of patient data is, rightly, heavily regulated. Patient confidentiality must always be protected, irrespective of the potential opportunities that data sharing creates. But that is not enough. For data to be truly valuable, it must be collected ethically, used responsibly and managed properly. Furthermore, just as the foundation of good healthcare is based upon the confidence between doctor and patient, trust in the data collector is necessary for the transformative potential of health data to be realised.

Confidence in data

Data security and privacy is the key to trust – and without it, data is worthless. First and foremost, longitudinal patient data must be anonymised, structured and coded so that patients and GPs can’t be re-identified at a later stage. The most effective datasets are built and maintained using the right protocols, facilitating reliable and accurate data that yields transformative insights whilst safeguarding privacy at all times.

A practical example of this is The Health Improvement Network (THIN), Cegedim’s proprietary database, which NICE cites as a source of observational research data that can help inform healthcare planning. Databases like THIN give health stakeholders access to de-personalised,
non-extrapolated primary care records that can empower healthcare research to unlock more effective models of care.

Combining such a rich data source with the resources of private, public sector and research bodies is key to identifying a better way of addressing current patient pathways, trends and understanding of the wider healthcare economy; from economic modelling and more effective resource planning, to informing the discovery, development and use of high-value medicines. Smart use of data is increasingly being recognised as a fundamental driver of health service improvements and enhanced patient outcomes. However, as healthcare stakeholders seek to redesign services and transform care, the most effective solutions may rely not on new tools of disruption, but on data that’s already routinely captured through everyday NHS services. Aggregated patient data – ethically captured, managed and shared collaboratively amongst all healthcare stakeholders – could just be the key to better care and better patient outcomes.

Steve Bradley is Group Managing Director at Cegedim UK. Go to