A Scotland-wide research collaboration is calling for more patients and professionals to share their stories and help shape its vital research into liver services across Scotland.

With Scotland facing some of the worst rates for liver disease in the world, the Scottish Hepatology Access Research Partnership (SHARP) says it wants to elevate the voices of lived experience in its work as it seeks to play a leading role in improving the landscape of liver disease services in Scotland.

Established just seven months ago, SHARP is a country-wide initiative bringing together liver disease specialists, nurses, GPs, public health experts and professionals from social care services and alcohol and drug partnerships.

Vanessa Hebditch, Director of Communications and Policy at British Liver Trust, one of the partners in the group, says:

“We’re delighted to be one of the key partners of this initiative. By placing the patient voice at the centre of the partnership, we aim to gain much better insight into the barriers that patients face when accessing liver services.

“We hope that the resulting research will drive up care across Scotland and the rest of the UK.”

To gain a greater understanding of the barriers and challenges facing patients in accessing liver services, SHARP has developed a new questionnaire which can be completed online.

This questionnaire invites patients and researchers alike to share their experiences of services in an effort to understand the current problems and to improve future care and treatment and inform research initiatives.

Co-lead for SHARP, Professor Ewan Forrest, a Consultant Hepatologist with NHS Greater Glasgow and Clyde and  NHS Research Scotland’s Hepatology Clinical Lead says recognising liver disease is difficult:

“Liver disease usually develops silently with no signs or symptoms, and the routine tests currently done in general practice do not detect unsuspected liver scarring or cirrhosis.

“This presents a huge healthcare challenge. Combining the insights and expertise of teams across the country is one part of the work of SHARP, but to truly understand the barriers to accessing liver services and ensure we can provide the best care for the future, the views of patients and the public are vital.

“I urge all of those affected by liver disease, including family, friends and carers to complete the questionnaire and ensure your voice is heard.”

SHARP says responses to its new questionnaire will help efforts to investigate key areas of its work spanning early detection, access to and engagement with services, and exploring new technologies for the management of liver disease.

One patient who has already engaged with services, Kirsty Mills, said:

“SHARP has been great in giving me an opportunity to offer my views and experiences which has made me feel very included and valued. It’s reassuring to know that this will help to decide the benefit of research projects and shape them, potentially leading to liver service improvements that could benefit both current and future patients across Scotland.”

Dr Ruairi Lynch, Consultant Hepatologist and Gastroenterologist at NHS Tayside and Co-lead for SHARP said that around three-quarters of people with scarring of the liver not diagnosed until they attend hospital with complications.

As a result, he says, many Scots are reaching end-stage liver disease where treatment options are limited before accessing services meaning their life expectancy is “significantly reduced”, adding:

“It is vital that SHARP plays a leading role in gaining a detailed picture on issues relating to the accessibility of liver services for those at risk of developing liver disease as well as those who already have liver disease.

“We can then address these issues and put in place the right research, interventions and support to make improvements in care. This requires input from all affected and that is why it is hugely important to our work that we get views and input from patients, their families and carers, in addition to the research community.”

Read more: Chief Scientist calls for more research volunteers; Major investment in Scotland's cancer research; Genome research sees £46.3m boost; Funding boost for hepatology research

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