Working with patients and the public

Why engaging patients and the public in Liver Disease Research matters

People affected by liver disease have a say in the research we do through the Vocal Liver Network. Members of the network include patients, carers, members of the public and people from community organisations. People who take part are paid for their time.

Many people with liver disease do not have symptoms of the disease until it is at an advanced stage. This, along with low public awareness of liver disease, means that it’s vital that members of the public work in partnership with researchers.

Their input ensures that liver disease research is relevant to the people it is aiming to help. The research covers all aspects of liver disease from early detection to improving treatments.

“I felt really valued coming in – initially I thought I had a little voice, but I feel what we say is listened to and it’s taken onboard. It’s given me the confidence to speak up as a voice of a Liver Patient.” Catherine Lennon

Contributions and experiences of network members

There are patients in the network who have direct experience of liver disease and others who have risk factors, as well as carers of people with liver disease. People who work or volunteer for organisations that support people who are at risk also take part.

As a member of the network, you can input into research by attending meetings and sharing your views and experiences. People also have a say as Governance Advisers, where they work more closely with the research teams, attend project meetings and input into decision-making about how projects should be done. Governance Advisers meet regularly together as part of a forum where they receive training and work on joint initiatives.

“It’s empowering to be a part of this. I see myself as an ambassador. I want to raise awareness and engage more at risk groups in my community. It’s become my business. The people’s stories are more powerful than the numbers.” Gertrude Wafula

Raising awareness of liver disease and research

Raising awareness of liver disease and research is vital, as the north-west of England has one the highest rates of liver disease in the UK.

Network members shared their experiences as part of an animation. In the film Jade, Kevin and Rucksana share their experiences of not knowing they were at risk. They describe how they wish they had been told and the kind of personally and culturally relevant advice that they needed.

Image – Recording – ID liver

Image – Recording – ID liver

The animation is now part of a new free training resource for health care professionals called Liver Talks: Let’s Talk About Liver Disease Risk. This resource provides an opportunity for health care teams to discuss and reflect on their experiences and identify strategies for having effective conversations.

“The ID LIVER project was established to diagnose and manage liver disease at earlier, treatable stages. This is particularly important for Greater Manchester and the north-west of England as we have some of the UK’s highest rates of advanced liver disease. The Vocal Liver Network is a fantastic way for us to address this major healthcare challenge by working in partnership with patients and the public in the design and management of their health research, ultimately benefiting communities that are traditionally underserved by current care pathways for liver disease”. Dr Varinder Athwal

Join our Network and help to tackle liver disease

If you’re interested in finding out more about the Network visit Vocal Liver Network.

Resources and further information

Talking about liver disease risk: Liver Talks training resource (British Liver Trust).