Top 10 priorities for alcohol-related liver disease identified

dame-sally-davies“The number of people with alcohol related liver disease has been increasing over the last few decades: death rates have risen considerably in this time and alcohol is now one of the most common causes of death in the UK. So this is an important area for research. It’s vital that we bring together patients, carers and clinicians to decide jointly what the priorities for research are in this area, and the NIHR is pleased to support the James Lind Alliance in doing so.”

Professor Dame Sally C. Davies FRS FMedSci
Chief Medical Officer and Chief Scientific Adviser at the Department of Health

For the past two and a half years, I have been a steering group member for the first ever James Lind Alliance (JLA), Alcohol-Related Liver Disease Priority Setting Partnership – to identify priorities for research. Our group comprises of a diverse range of patients, carers, clinicians and researchers. I was involved in highlighting community pharmacy practice and research perspectives, to the group, based on my clinical and research experience. Recently we held a workshop in London, where the top 10 priorities for alcohol-related liver disease were identified. Below is a press release outlining our work and the top 10 priorities.

Dr Ranjita Dhital PhD, MRPharmS, Post-Doctoral Research Pharmacist for the ADAM study, IoPPN, King’s College London. Email: ranjita.dhital@kcl.ac.uk

PRESS RELEASE                                                     

NIHR and BSG launch top 10 research priorities for alcohol-related liver disease

‘What are the most effective ways to help people with alcohol-related liver disease stop drinking?’ is the top priority question for alcohol-related liver disease research, according to new results from the JLA’s Alcohol-Related Liver Disease Priority Setting Partnership (PSP).

Research into alcohol-related liver disease has been highlighted as a priority by the NIHR, which jointly funded the James Lind Alliance (JLA) PSP with the British Society of Gastroenterology (BSG). Alcohol-related liver disease has become the most common type of alcohol-related death in England. It accounted for 64% (4,441) of all alcohol-related deaths in 2011, and for 65% and 62% of male and female alcohol-related deaths respectively – most among those aged 50-59 years.

Simon Denegri, NIHR National Director for Patients and the Public in Research, said:
“The more we understand the priorities and concerns of people with alcohol-related liver disease, their carers and those health professionals treating them, the more we can ensure that the research that is funded is relevant to their needs. So I am delighted to see the results of the NIHR and BSG PSP have launched today. I hope it will be the basis for future research collaborations between patients, carers, health professionals and researchers leading to new ways to care for and treat people with this terrible disease.”

The PSP was set up through the JLA last year (2015). Data were collected through a survey asking patients, carers and health professionals for their unanswered questions around the diagnosis, treatment and care of alcohol-related liver disease. Over 230 responses were received from across the UK, and the top 25 questions were then taken to the JLA Alcohol-Related Liver Disease PSP workshop in September (2016), where health professionals, patients and carers worked collaboratively to reach the following final Top 10:

  1. What are the most effective ways to help people with alcohol-related liver disease stop drinking?
  2. What are the most effective ways of delivering healthcare education and information about excessive alcohol consumption, the warning signs and the risks of alcohol-related liver disease to different demographics (including young people)?
  3. What is the most effective model of community-based care for patients with alcohol-related liver disease?
  4. What is the patient’s experience of alcohol-related liver disease?
  5. Do attitudes to perceived ‘self-induced illness’ amongst healthcare professionals affect treatment, care provision and compassion for individuals with alcohol-related liver disease?
  6. What are the most effective strategies to reduce the risk of alcohol-related liver disease in heavy drinkers?
  7. Does the stigma associated with alcohol misuse affect the willingness of people with alcohol-related liver disease to ask for help?
  8. What interventions improve survival in individuals with complications of advanced alcohol-related cirrhosis?
  9. How should depression be managed in the context of alcohol-related liver disease?
  10. What models of involvement of palliative care services in advanced alcohol-related liver disease are most beneficial?

The full list of verified unanswered questions, is available on the alcohol-related liver disease PSP website: http://www.psp.nihr.ac.uk/alcohol-related-liver-disease/the-results

Dr Steve Ryder, Chair of the British Society of Gastroenterology (BSG) /British Association for the Study of the Liver (BASL) Research Development Group, said:
“Alcohol-related liver disease (ARLD) is a disorder that has had disproportionately little research attention or spending in the past, despite its impact on patients and their families. ARLD remains the second highest cause of years of life lost in young men.  It is a huge step forward that the NIHR with BSG have been able to help set a series of key research questions which cover all aspects of ARLD, from its stigma to the potential areas for new treatments.  BSG believes that this provides a key step in ensuring that people and carers of people with ARLD will gain access to better understanding of the disorder and better treatments in the near future. We look forward to calls for research to answer these questions.”

Dawn Pallant, a patient involved in the Alcohol-related liver disease PSP workshop, said: “It was a real privilege to be involved in this day organised by the JLA. It is extremely unusual and an extraordinary opportunity for all of these people (patients, doctors, medical specialists, carers, charities and potential funding bodies) to have the time to meet with the prime objective of setting priorities to fund research. “

The Top 10 priorities encourage new research into alcohol-related liver disease and guide researchers to answer the questions that are important to those affected by the disease. To find out more about the work of this JLA PSP, please visit
www.psp.nihr.ac.uk/alcohol-related-liver-disease.

For more information please contact:
Kelly Lockhart – Communications
National Institute for Health Research Evaluation, Trials and Studies Coordinating Centre
Tel: 023 80595775 Email: k.lockhart@southampton.ac.uk

Notes to editors
JLA: The James Lind Alliance Priority Setting Partnership (JLA PSP) infrastructure is hosted by the National Institute for Health Research (NIHR) to provide the support and processes for Priority Setting Partnerships (PSPs). PSPs aim to help patients, carers and clinicians work together to agree which are the most important treatment uncertainties affecting their particular interest, in order to influence the prioritisation of future research in that area. For further information, visit the JLA website (www.jla.nihr.ac.uk).

NIHR: The National Institute for Health Research (NIHR) is funded by the Department of Health to improve the health and wealth of the nation through research. Since its establishment in April 2006, the NIHR has transformed research in the NHS. It has increased the volume of applied health research for the benefit of patients and the public, driven faster translation of basic science discoveries into tangible benefits for patients and the economy, and developed and supported the people who conduct and contribute to applied health research. The NIHR plays a key role in the Government’s strategy for economic growth, attracting investment by the life-sciences industries through its world-class infrastructure for health research. Together, the NIHR people, programmes, centres of excellence and systems represent the most integrated health research system in the world. For further information, visit the NIHR website (www.nihr.ac.uk).

BSG: The British Society of Gastroenterology (BSG; www.bsg.org.uk) is a registered charity and the professional organisation for the promotion of gastroenterology and hepatology within the United Kingdom. We have over 3,000 members, drawn from the ranks of physicians, surgeons, pathologists, radiologists, scientists, nurses, dietitians, and others interested in the field. Founded in 1937, the BSG has grown from a club to a major force in British medicine and a renowned name at European and broader international levels.

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Making the ADAM Trial 2 minute video

Over the past few weeks we’ve been working on a video about the ADAM study to enter into the NIHR New Media Competition.  We’ve been busy drawing storyboards, making props and filming the video in time for the deadline of 31st March.

NIHR have asked researchers to create videos which promote awareness of their research and also highlight the use of Patient and Public Involvement in developing studies.  We jumped at the chance to be creative and most importantly to show how much we have involved service users in the ADAM trial.  Service users have helped us decide on the intervention content such as the type and style of support provided.

We started with a storyboard, planning each “shot” of the video and the story we wanted to tell:

Storyboard image

We drew our plan out on a large whiteboard and then worked together to create a clear story.  It was a real challenge to communicate all our points in the 2-minute timeframe but we got there in the end.

After exploring different ways of doing the video such as using software available online; we decided to do the majority of the video using a whiteboard, enlisting the researchers to tell the ADAM story through a single shot only using various props.

The ADAM researchers (sadly minus Kate who was missed!) spent two days at the beginning of March completing the production of the video.

ADAM letter image             Personal Achievement Award image

We spent Day 1 finalising the storyboard (chopping out parts that made it last longer than 2 minutes), and the script.  The second day was spent using our arts and crafts skills to create the props and images we needed for the video:

props image

We devised the script as a team, after much rehearsal we were ready to start audio recording on day 2.

Finally, the team completed filming, using only a few props and a whiteboard to create the images and “shots” we needed.We are excited to share the finished product with you all.

Check out the ADAM trial video here and let us know your thoughts!