Section 6 Surveillance and monitoring
6.1 Action on Hepatitis C must be based on the best evidence available. Previous sections of this Action Plan have listed a number of research studies planned for the next two years. This section describes plans for improvements in surveillance and monitoring initiatives. The data resulting from these actions will provide a firm evidence base for planning further action and service provision both now and beyond September 2008.
6.2 Surveillance is crucial for informing planning and delivery of services, and all surveillance activities must be specifically geared for this purpose. At a national level, Hepatitis C surveillance is currently undertaken through two main routes:
- The national laboratory surveillance system - collects data on individuals who have been chronically infected with Hepatitis C as reported by laboratories that provide testing facilities. At present, for reasons of patient confidentiality, only limited data are collected.
- The national clinical database - collects extensive data on individuals who have attended at least one hospital appointment for specialist care or treatment for Hepatitis C.
6.3 Although useful, both these methods of surveillance have weaknesses in that they only collect information on the minority of infected individuals who: a) have been tested for Hepatitis C; and b) who have been given a positive diagnosis.
6.4 Until recently, Hepatitis C surveillance was also undertaken in Glasgow and Lothian (and to a lesser extent in Tayside and Grampian) through unlinked anonymised testing of injecting drug users who had been tested for HIV. In addition, the Scottish Drug Misuse Database collects information on demographic and behavioural characteristics, and injecting and sharing behaviour, of new clients coming to the attention of medical services (general practice, hospital etc.) and specialist drug services (statutory and non-statutory). This data is published in the annual report, Drug Misuse Statistics Scotland. As mentioned in Section 2 (Prevention), from April 2006, a new data collection form was introduced (the SMR25), which includes questions on blood-borne virus vaccination and testing - including testing for Hepatitis C. 4
6.5 Again, both these methods of surveillance are useful, but are limited in that they only collect data on individuals who have come forward for HIV testing and treatment for problem drug use, respectively, and so they do not accurately reflect Hepatitis C prevalence among all injecting drug users.
6.6 To ensure that services are able to respond to the true level of need, surveillance activities must be improved. In particular, there need to be better methods of measuring Hepatitis C prevalence and associated behaviours among a nationally representative sample of injecting drug users. This Action Plan proposes to do this through a survey of injectors accessing needle exchange services across Scotland. This new initiative will provide Scotland's first accurate measure of Hepatitis C prevalence among current injecting drug users.
6.7 All surveillance activities will allow for data to be disaggregated by sex, age and ethnicity, so that it is possible to determine how men and women, different age groups, and different minority ethnic populations, are affected by Hepatitis C.
6.8 It must be acknowledged, however, that our information on the total number of people in Scotland who have Hepatitis C will continue to be based on estimates, since there will still be a large number of individuals who contracted the virus years ago, and whose infections are undiagnosed. NHS Boards should consider whether they are able to take additional steps using the funding allocated to them over the next two years to identify and offer testing (and if necessary, treatment, care and support) to these individuals.
Actions on Surveillance and Monitoring
By Oct 2006
The Scottish Executive Health Department will provide two-year funding to the Viral Hepatitis Group and Health Protection Scotland to support the continued development of the national clinical database on Hepatitis C. Reports of this data will be published annually in The State of the Hepatitis C Epidemic in Scotland.
By Dec 2007 and annually
The Information Services Division ( ISD) will publish statistics on the number of individuals entering treatment for problem drug use who have been tested for Hepatitis C. This data will be presented by NHS Board.
By Dec 2007
Health Protection Scotland will publish the results of a census of Hepatitis C prevalence among injecting drug users attending needle exchange services across Scotland.