Would anyone come? Investigating liver health among Mongolians living in the UK

“When we started we didn’t know if anyone was going to come,” says Emily Martyn, doctoral clinical fellow in the Crick’s HBV Elimination Lab and one of the instigators behind Hep-MoLo, a pilot liver screening programme for Mongolians in London combining community-based public health and scientific research.

In the end, a fourth Saturday clinic had to be added due to the success of the first three. 174 Mongolians – including people from as far away as Manchester – came to the Kensington Aldridge Academy in West London to be screened for a range of liver health risks.

Mongolia has the highest incidence of liver cancer in the world, partly driven by high rates of viral hepatitis infection. Hepatitis B is a virus spread through blood and bodily fluids, and commonly transmitted from mother to child at birth, which is highly prevalent in Mongolia. Across the world around 250 million people live with chronic hepatitis B infection.

Many live with the virus for years without symptoms. While some never develop complications, others unwittingly develop fibrosis – scarring – which can lead to cirrhosis and liver cancer, resulting in more than a million deaths every year.

Once diagnosed, hepatitis B can be suppressed with long-term anti-viral drugs which substantially reduce the risk of long-term liver disease.

Metabolic liver disease – caused by fat accumulating in the liver – can also lead to cirrhosis and liver cancer and is rising across the world. Little is known about its prevalence among Mongolians in the UK, although it is a rising threat in many populations, “so we wanted to measure that too,” says Emily.

A new public health challenge is emerging because more people in regions where chronic hepatitis B is endemic – Africa, the Eastern Mediterranean and Western Pacific – are likely to develop both liver diseases, as global rates of obesity and type 2 diabetes increase, with consequences that are not fully understood.

Philippa Matthews, Head of the Crick’s HBV Elimination Laboratory, explains the process of consenting to take part in scientific research to a man who tested positive for hepatitis B several years ago. “They said it is inactive so I just want to make sure,” he says. His test was negative. Credit: Fiona Hanson.

“You might think having two liver diseases is worse than one,” says Emily who is completing a PhD investigating the overlap between chronic hepatitis B and metabolic liver disease. “But the published data are conflicting.”

Some studies show having both hepatitis B and metabolic liver disease increases the risk of cirrhosis and liver cancer, while others show the opposite.

To try to unpick what might be going on, Emily’s research focuses on lipids in the blood. Liver diseases can alter the way the body metabolises these fat molecules, so samples from those tested at the clinic are analysed by the Crick’s Metabolomics Science Technology Platform working with James MacRae and team, producing a detailed lipid profile.

“With a small defined population we can ask questions around whether certain lipids are important, whether there are different lipid signatures between groups with both conditions, one or neither,” says Emily.

Hep-MoLo is “a small cog in a bigger wheel”, one element in the work of the Crick’s HBV Elimination Laboratory, which also studies cohorts of people with chronic hepatitis B – in Kenya, South Africa and Uganda – who experience outcomes ranging from no consequences to fatal cirrhosis or liver cancer.

“If we are going to reach global goals for elimination of hepatitis B as a public health threat (which the WHO wants to see by 2030), we’ve got to do much better at understanding that granularity of outcomes,” says Philippa Matthews who leads the lab and oversees the Hep-MoLo project.

The condition often impacts groups for whom healthcare is difficult to access, among them migrants who can face barriers such as language, stigma or lack of knowledge. Partly to address this, the NHS 10 Year Health Plan envisages shifting care from hospital to community where possible.

“There’s lots of discussion at the moment on how to connect people to care in a way that’s meaningful, sustainable and accessible, but without expecting more resources,” says Philippa.

“Rather than funnelling people into ivory tower institutes in central London, we are investigating bringing care out into communities. While Hep-MoLo is effectively a pilot project, it’s actually a precedent for saying this is one way service delivery could look.”

Pictured inside a clinic van, senior peer practitioner James Rock from UCLH scans a participant’s liver to detect damage. This woman travelled from Manchester after seeing the clinic advertised on a community website, “I never had liver testing before in the NHS. They say if you want a liver appointment you wait for a very long time.” Credit: Fiona Hanson.

The project is a collaboration between the Crick, the NHS Find & Treat outreach service at University College London Hospitals and the Mongolian Community Organisation (MCO), which co-produced the events.

There were eight Mongolian speakers at each clinic, which was staffed largely by volunteers – among them doctors, specialist nurses and phlebotomists. “Participants can have all these tests done and speak to all the professionals with translators,” says Enkh Amar of the MCO.

“There was a really lovely sense of community and shared experience,” reflects Philippa. “That’s one of the learning points about how to engage people in their own health and clinical care.”