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Primary care data set to accelerate early identification of the 1000s of ‘hard to reach’ patients unknowingly living with Hepatitis C
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Ahead of World Hepatitis Day (28 July) and part of NHS England’s plan to eliminate the blood borne virus in advance of 2030, a pilot programme has been launched which will use primary care records to accelerate the early diagnosis and treatment of the estimated 81,000 people unknowingly living with Hepatitis C in England.
A recent UK Health Security Agency (UKHSA) report has indicated that most of the remaining infection – an estimated 50,000 people - may be from historic risk factors best found within the primary care population.
The pilot programme, led by NHS England (NHSE) in collaboration with MSD, will use Patient Search Identification (PSI) software, alongside EMIS Pathway which helps find patients with certain conditions, or those at risk of them, and manage their care.
Starting in Autumn the three-month programme will search an estimated 300,000 primary care records for patients who have a coded Hepatitis C virus positive test, but no treatment record, and those with at risk factors, such as intravenous drug use, blood transfusions or organ transplantation before 1992.
Once an at-risk patient has been identified, one of the seven Operational Delivery Networks (ODNs) signed up to participate in the programme will invite the patient for a review, screening and if appropriate, treatment.
Dr Ian Wood, a GP and EMIS Clinical Director, said: "At a time when primary care is enormously overstretched with both a workload and workforce crisis, it was critical that any new technology aiming to reverse and spearhead this did not exacerbate the capacity issue.
The pilot aims to address this gap. It realises the value and power of primary care data, combined with EMIS-X Analytics, in identifying cohorts of patients across a region who might benefit from an intervention.
"This is a challenge that can be tackled well in multiple healthcare settings, so rather than keep these lists within the GP practice, all the necessary data permissions and safeguarding is in place to share with the most relevant healthcare team that can best meet those patients’ needs. It doesn’t have to be the GP - working together across the healthcare industry we can get the best care to the right patients in as efficient a way as possible.”
The pilot programme, which requires GP practices to simply agree to share only the relevant primary care data with specialist secondary care teams within the local ODN, comes after Hepatitis screening rates declined within primary care by 36 per cent during 2020 due to Covid-19 restrictions.
Commenting on the importance of screening using primary care records Dr Stuart Flanagan, consultant physician of HIV and BBV Medicine, said: “Patients at risk from Hepatitis C within primary care are especially hard to reach. But it’s vital that we do.
“The virus can be asymptomatic for decades with many patients often unaware that they have the condition until it’s developed into far more serious, more difficult to treat conditions, and even fatal illnesses such as cirrhosis, liver disease or cancer.
Combine this with there still being stigma attached to the virus, which means some patients may not feel comfortable sharing parts of their current or past lifestyle with their GP, and you’ve got a big hurdle we need to overcome.
Dr Flanagan who works at the Mortimer Market Centre in London and is the Hepatitis Lead for Central and North West London NHS Foundation Trust, adds: “This isn’t just about eliminating Hepatitis C, it’s about preventing a treatable condition from developing into life threatening illnesses. We can’t afford to wait for patients to ask for help, by that time it’s far too late. We need to go to them.
“We still don’t know the true scale of people living with this condition. The work that has gone into developing an algorithm and the software to identify patients at risk is a vital piece of work. It will help save lives.”
Hepatitis C is a virus that can infect the liver. If left untreated, it can sometimes cause serious and potentially life-threatening damage to the liver over many years.
According to data from NHS England, 10 to 40 per cent of people who have untreated Hepatitis C will develop cirrhosis. One in five people with cirrhosis will develop liver failure and a further one in twenty develop liver cancer.
Kuldip Sembhi, National Hepatitis C Virus Elimination Programme Lead for MSD, said: “The good news is that today, thanks to major leaps in medical research, the goal of being able to eliminate Hepatitis C is now possible. With early diagnosis and the deployment of tools such as this in the primary care setting, we can help identify those who may benefit from treatment, potentially helping to prevent disease-related complications later in life.
This pilot programme is yet another example of our ‘leave no stone unturned’ approach to disease elimination. This is industry and NHS working at its best – trialling solutions that aim to improve outcomes for all patients, such that no one risks falling through the cracks.
Dr Wood adds: “We’re proud to be working in partnership with the NHS and MSD towards the goal of eliminating Hepatitis C. Increasingly, primary care records are playing a significant role in improving population health. This is yet another occasion when insight from primary care can make a significant contribution to positively changing the health and lives of so many people.”
The Hepatitis C Virus (HCV) Elimination Programme is working towards a shared goal of eliminating the virus as a public health issue in England by 2025 – five years ahead of the World Health Organisation’s own target of 2030.
This article reflects our collaboration with MSD as part of NHS England's Hepatitis C Elimination Programme at the time of publication, and was part of MSD’s committed investment towards the programme. This partnership has since concluded.