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Arden & GEM CSU > Case Studies > Developing a clinical registry and outcomes system for hepatitis C

Developing a clinical registry and outcomes system for hepatitis C

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The NHS England national Hepatitis C programme aims to eliminate viral hepatitis in England by 2025. In order to achieve this objective, accurate information about patients with the disease and the effectiveness of treatments was needed.  

Arden & GEM’s business intelligence team developed a patient registry and treatment outcome system to improve the quality of data analysis to enable effective expenditure planning, inform the creation of new clinical service models and to maximise effectiveness of treatment.

The unique system collects data from more than 120 Trusts and is pivotal in supporting the interaction of all agencies involved in the diagnosis, treatment, monitoring and cure of patients with hepatitis C in England.

The challenge

Hepatitis C is a blood-borne virus affecting the liver. Four-fifths of those infected develop chronic hepatitis C, which can cause fatal cirrhosis and liver cancer if untreated. Recent estimates suggest that around 160,000 people are chronically infected with hepatitis C in England. Crucially, hepatitis C is preventable, treatable and curable for the majority of patients.

The NHS England national Hepatitis C (HCV) programme aims to eliminate viral hepatitis, by 2025, through increasing diagnosis and treatment rates, promoting joined-up working across the commissioning pathway and preventing new infections.

In order to achieve this objective, NHS England and Public Health England needed to collect accurate information about patients with the disease and the effectiveness of treatments, supported by intelligent analytics and meaningful reporting.

A national clinical registry system was needed to hold information on:

  • Patients engaging with secondary care services following firm diagnosis of hepatitis C
  • Patient treatment, from commencement to cure
  • Treatment outcomes and instances of retreatment.

Our approach

Following Arden & GEM’s successful delivery of the National Commissioning Data Repository (NCDR) – which provides a complete picture of specialised service activity – we were commissioned by NHS England to create the national patient register and treatment outcome system for hepatitis C patients.

Through setting up and facilitating strategy, clinical and user groups, we were able to work closely with the client, clinicians and end users to design and develop a clinical registry application that minimises administration while ensuring that the data collected delivers against sophisticated reporting requirements.

In addition to developing the repository for patient information, we also uploaded historical data and created automated reports that enabled improvements in data quality.

In order to incentivise data collection NHS England also offered a Commissioning for Quality and Innovation (CQUIN) to healthcare providers to encourage population of the system.

Our intuitive web based application was developed using the secure N3 network and is fully compliant with Information Governance and data security regulations. The system has built in user permission structures that ensure data is audience appropriate and also provides an auditing history and backup facility.

We completed extensive penetration testing to ensure that all security requirements were met and surpassed. We also delivered system training to ‘super users’ in more than 120 Trusts.

The Arden & GEM team resolved identified development issues within a very short space of time to deliver an excellent solution.

Graham Foster, Professor of Hepatology at NHS England

The outcomes

The hepatitis C system has provided transparency for NHS England and Public Health England, and has vastly improved the quality of data and analysis.

  • The information system is enabling the oversight of patients with HCV, their infection history and the setting in which they are engaging with care. This intelligence is in turn enabling the creation of new clinical service models, for example developing a ‘test and treat’ service for the more chaotic patient cohort.
  • By incorporating recording on potential secondary care demand the system has also enabled more effective expenditure planning. Specifically, the data is informing a national strategic procurement exercise to secure a large volume of treatments at a competitive price which will deliver cost efficiencies.
  • Information and analysis about the success of treatments is enabling the adjustment of treatment regimens (where appropriate) to maximise effectiveness and minimise duration.

Next steps

The registry has also been built so that it can be easily adapted for other conditions and clinical requirements without the need for expensive customisation. It is currently being adapted for use by Armed Forces intervention and mental health services in their support of veterans.

The elimination of hepatitis C is a worldwide aspiration. We are aware that the hepatitis C patient registry and treatment outcome system is the only one of its kind in the world: other countries have developed registries or treatment monitoring systems but not information solutions addressing both elements. This application is becoming a pivotal information system, supporting the interaction of all agencies involved in the diagnosis, treatment, monitoring and cure of patients with hepatitis C in England.

Ceri Townley, Head of Information at NHS England Specialised Services

 

The Arden & GEM team are great to work with. They build strong relationships across organisations, which promotes a flexible and responsive service. They often surpass expectations with their ability to lead the CCG though complex projects.
Business Intelligence Manager, Liverpool CCG

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