Understanding the pathway: barriers to data collection and onward referral to specialist

hepatitis C services for PWUD in London

2013 LJWG pilot projects • LJWG London Consensus 2011 set out clear

recommendations

• assess the impact of the recommendations

• measured rates of testing, diagnosis and referral

• data collection proves challenging

2013 LJWG pilot projects • no funding, resources provided on a goodwill

basis • variation in existing service provision across

the sites • interim findings suggest positive impact on the

number of patients diagnosed and referred

Gilead Fellowship 2014• builds on the findings of the LJWG 2013 pilot

projects

• need for comprehensive data collection

• barriers to onward referral along the care pathway

• provide recommendations to address these barriers

Understand the barriers to data collection

Why Data Collection?• variations in infrastructure for collecting data• a lack of baseline information• lower levels of outcome data than expected• need robust data in order to secure action

from commissioners and policy makers. • good practice models to be shared

Unpack barriers in the care pathway to onward referral at

specialist services

What needs to change• only third of London boroughs has a testing-to-

treatment pathway in place • some drug treatment services in the same borough

were unaware of the pathway• variation in practice not only between boroughs, but

also between services in the same borough• barriers to onward referral prevent effective care

pathway

Public Health Report on Commissioning of HCV services in London for People who Inject Drugs, Health Service Journal, 2013

Solutions• set local treatment aspirations and monitor

achievement against them. - example Scottish Action Plan 1.

• replicable data collection systems to monitor patient pathways and assess the impact of interventions

• identify the practical changes needed in hepatitis C care pathways

1. Morris. Tackling hepatitis C: a tale of two countries. Lancet 2011; 377: 1227–1228

Methodology of Service Evaluation• mixed quantitative and qualitative design• a combination of ethnographic observation and

interviews with key personnel • Outcome measure data will be collected

through the service data collection infrastructure

• Qualitative data will be captured through surveys, interviews, focus groups and diary notes.

Who

• drug treatment services• specialist hepatitis treatment service providers• service users • commissioners • two sites in London - well established and effective parts of their services - also areas for improvement

Summary• need for better data collection

• unpack the barriers to onward referral

• provide recommendations from the findings

• help implement effective care pathways