By Kyle Main, Policy Officer, AMRC

Published: 28 November 2018

Today AMRC is launching our new report ‘Saving lives with patient data registries. The report shines a spotlight on the activity underway across our member charities to set up and use patient data registries. It focuses on the impact registries have on delivering benefits to patients, the NHS and researchers. 

Why charities develop data registries

Registries set out to collect uniform data about patients in a centralised database. They are usually focused on data from patients with the same disease or condition. When charities make the decision to collect this data, they are often bringing together data that is not easily accessible. In doing so, they lower some of the barriers to research.   

Patient registries can open up new understandings of how a disease or condition progresses. This helps better plan and assess treatments and put in place care pathways.

Registries are increasingly capable of delivering innovative research that can accelerate patient access to new medicines and treatments. This is largely though the ability of registries to quickly identify patients who might be suitable for clinical trials, as well as supporting assessment of trial feasibility. They can also help regulators decide whether to commission a medicine for use in the NHS.  

Collecting data and monitoring patients via the registry can support faster approval of new medicines by providing information during the drugs commissioning process. This has the potential to support more rapid uptake of innovation across the NHS which could result in cost-savings for our health service.

Charities are already considering the interoperability of registry data to help manage long-term conditions and identify risk factors for disease exacerbation. The value of charity registries has huge potential to be amplified through linkage to data held about patients in national datasets, as well as to other data sources, such as socioeconomic, environmental, and social care data. Such linkage can also help provide insight into the impact on patients with multiple long-term conditions, which is an increasing area of concern in the ageing population, and amongst lower socioeconomic groups.

Delivering the aims of the Life Sciences Industrial Strategy

The Life Sciences Industrial Strategy, published in 2017, set out recommendations to better harness data and digital. The document recognised the potential of patient registries and included a specific recommendation on the establishment of registries with support from relevant charities.  

A number of recommendations have already been progressed from the Strategy through the first sector deal in December 2017, including Digital Innovation Hubs. These Hubs are set to be an important part of our health data landscape with the potential to deliver more seamless data access for researchers from the NHS. It’s important that the government and national data controllers, such as NHS Digital and Public Health England, act to further support charities in collecting and linking data with this wider system. There is a real need to ensure interoperability so charity registries are compatible as system changes take place across the NHS in the way that data is collected.

The Life Sciences strategy also calls for further improvements in UK clinical trial capabilities, with an aim to see a 50% increase in clinical trials over the next five years, as well as driving innovation in the way trials are conducted. Again, registries can have a key role in achieving this ambition.

Harnessing and building upon the potential of registries

We must harness all the tools we have that can drive efficiencies and deliver new medicines to patients, including patient data registries. We hope that our new report will kick-start a more substantial dialogue between charities, government, national data controllers, industry and other stakeholders to ensure that the UK works to develop an optimum environment for sharing and linking data.

A first step on this pathway, would be recognition of registries in an upcoming sector deal between government and the life sciences sector. Inclusion will provide a platform to develop some clear steps to ensure that the potential of charity registries to contribute to the UK’s innovation landscape is harnessed for the benefit of patients. As we look ahead to the publication of the NHS England’s long-term plan, due in December, charity-supported registries have clear potential to help support delivery of the plan’s ambitions for research and innovation.