James Lind Alliance
Priority Setting Partnership in Alcohol-related Liver Disease
• The James Lind Alliance (JLA) is a non-profit making initiative
established in 2004.
• It brings patients, carers and clinicians together in Priority Setting
Partnerships (PSPs) to identify and prioritise the Top 10
uncertainties, or unanswered questions, about particular health
areas.
• The aim of this is to make sure that health research funders are
aware of the issues that matter most to patients and clinicians.
• Alcohol-related liver disease was highlighted as a priority for the
National Institute for Health Research (NIHR) and it was decided
to run a JLA PSP to identify future research needs, agreed by the
patients, carers and health professionals who face this issue
every day.
• A steering group was set up. Health professionals, patients and
carers, all with common interest in ARLD, who organised a
survey to collect unanswered questions.
• The Top 10 most important unanswered questions were agreed
by patients, carers and health professionals at a workshop in
September 2016.
• The Top 10 and full list of unanswered questions can be found at
www.jla.nihr.ac.uk and on a handout in your delegate packs.
The Top 5 • What are the most effective ways to help people with alcohol-
related liver disease stop drinking?
• 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)?
• What is the most effective model of community-based care for patients with alcohol-related liver disease?
• What is the patient's experience of alcohol-related liver disease?
• Do attitudes to perceived 'self-induced illness' amongst healthcare professionals affect treatment, care provision and compassion for individuals with alcohol-related liver disease?
Ryan Buchanan [email protected]
Research supervisors:
Leonie Grellier
Julie Parkes
Salim Khakoo
Alcohol related liver disease: can we learn anything from Hepatitis C?
Background & rationale • Hepatitis C causes liver cirrhosis and hepatocellular
carcinoma and is a leading cause of mortality world-wide
• Hepatitis C is now easily cured
• Many cases are undiagnosed or disengaged from care services
5
Stanaway et al. Lancet. 2016 Public health England. Report on Hepatitis C. 2015
BACKGROUND
under active follow up
Over 200 cases undiagnosed
Health Protection Agency – Hepatitis C in South-East England. 2011. Available online: https://www.gov.uk/government/publications/hepatitis-c-in-the-uk. Accessed September 12, 2014. Buchanan R, Shalabi A, Grellier L, Khakoo SI. PTU-112 Hepatology outreach services to overcome inequalities in hepatitis c care in an isolated UK population. Gut. 2015;64((Suppl 1):A111.1-A111).
AIMs (1) • Reduce the burden of
undiagnosed HCV
• Link cases directly to secondary care
• Provide locally available treatment
Reduce the burden of undiagnosed HCV
Advertisments from Isle of Wight HCV public health awareness campaign – used with permission
Reduce the burden of undiagnosed HCV
Pharmacy based tes t ing fo r HCV
Local t reatment
serv ice
Funding for specialist nurse
Close liaison with network MDT
Drug transport and storage
Training for specialist nurse
Fibroscanner funding and purchase
Local t reatment serv ice at 15
months
No
t treated
Cirrhotic patient* *obvious evidence on imaging or fibroscan >11.5kpa
Treated
AIMs (2) • Evaluate effectiveness of the
initiative
What was the uptake of pharmacy based testing among PWID?
Results from the IOW HCV bio-behavioural survey
Buchanan R. Unpublished data. 2016
Buchanan R. Unpublished data. 2016
How many cases of HCV are still missing?
…and were we right to be looking for ‘the missing 200’?
What is the prevalence of HCV in PWID on the IOW?
29% (CI 13-45)
Buchanan R. Unpublished data. 2016
So where are the missing 200?
Estimated total PWID network size = 225 Buchanan R. Unpublished data. 2016
So where are the missing 200?
Risk Group Number in group HCV Prevalence in group (%)
Cases
PWID 474 39 181
Ex-PWID 311 24 75
General pop. 130,000 0.006 65
Non-white ethnic.
400 0.01 2
Total 323
Health Protection Agency – Hepatitis C in South-East England. 2011. Available online:
So where are the missing 200?
Risk Group Number in group HCV Prevalence in group (%)
Cases
PWID 474 39 63
Ex-PWID 311 24 75
General pop. 130,000 0.006 65
Non-white ethnic.
400 0.01 2
Total 204
225 29
Health Protection Agency – Hepatitis C in South-East England. 2011. Available online:
Applicability to alcohol related liver disease
HCV - an ‘easy fix’
•Binary
•Disease related to human behaviour but the
treatment is not
•Solutions driven by pharma’
But there are ‘transferable’ opportunities…
The community pharmacy in alcohol related liver disease
Could the CP screen clients for harmful alcohol
consumption?
Could a brief intervention reduce alcohol intake?
Could the CP identify patients with ArLD?
Pharmacist
The community pharmacy in alcohol related liver disease
Experience on the IOW:
AUDIT-C scratch cards for clients
queuing for prescriptions
4567 completed in 12 months
2555 had a score of 3 or more
377 had a score of 9 or more
Pharmacist
The community pharmacy in alcohol related liver disease
Numerous feasibility studies of BI for
potentially harmful alcohol consumption
in CP
No RCT
Watson et al. The feasibility of providing community pharmacy-based services for alcohol misuse: a literature review. 2009. IJPP l
Pharmacist
Social networks in alcohol related liver disease
• Social networks are key in the initiation of
harmful alcohol consumption
• Social networks may explain the mechanism
of action of AA
• Alcohol consumption behaviours are
‘contagious’
Mundt et al. Academic Paediatrics. 2011 Rosenquist et al. Annals of Internal Medicine. 2010 Kaskutas et al. Study of Addiction to Alcohol... 2002
Social networks in alcohol related liver disease
Is it possible to manipulate the social network
to reduce harm?
Acknowledgments
Research Supervisors:
Salim Khakoo
Julie Parkes
Leonie Grellier
Isle of Wight team:
Pembe Hassan-Hicks
Janet Brinton
Joy Wilkins
Wendy Farrow
Pinnacle health team:
Kevin Noble
Gary Warner
Thank you
Southampton Hospital team:
Jaqueline Swabe
Elizabeth Burge
Mark Wright
CRN Wessex
Clinical Research Network
Wessex
An introduction to study support services
Clare Rook
research delivery manager
Clinical Research Network Wessex
What is the Clinical Research Network
A member of the NIHR
family…RDS, AHSN, BRU,
BRC, CLAHRC
CRN Wessex is 1 of 15
LCRNs supporting NIHR
portfolio research
Clinical Research Network Wessex
CRN Wessex Geography
CRN Wessex geography
Clinical Research Network Wessex
Up to 15 ways of
providing CRN
study support
CRN wide single
approach to study
support
Division
1
Division 2
Division 3
Division 4
Division 5
Division 6
Single
National Approach
Single National Approach
Clinical Research Network Wessex
Study Support Services
Clinical Research Network Wessex
Network Resource
• Research Nurses
• Clinical Trials Assistants
• Study Coordinators/Facilitators
• Support Services
–Pharmacy
–Pathology
–Radiology
35
Clinical Research Network Wessex
Further information
t 01489 77 11 20
t 01489 77 11 11
Integrated Treatment for ARLD: making it happen Workshops Kathy Wallis, Senior Programme Manager
Workshop introduction Workshop 1
Approaches for implementing local treatment pathways
Main Room Richard Aspinall, Harriet
Gordon
Workshop 2 Approaches for
commissioning local treatment pathways
Breakout Room Aidan Lewis, Ileana Cahill
Locality Action Planning Agree next steps for
developing local services Main Room
Plenary Session Top 3 actions / learning
from each group Main Room
14:10 – 14:50
14:50 – 15:20
15:20 – 15:50
Timings