First, thanks to the many individuals who shared their experiences and perspectives through written surveys or interviews, including those who are infected with or affected by hepatitis C; staff, volunteers, coordinators/directors and board members at the case study sites; health experts; hepatitis C researchers; other stakeholders, including members of non-governmental organizations; Health Canada staff from other departments; representatives from provincial/territorial ministries of health; representatives from pharmaceutical companies; regional Program staff; and Program Advisory Group members.

Our appreciation is extended to Barrington Research Group and its team for the effort and time put into the research design, data collection and results analysis for the evaluation of years one, two and three of the Health Canada Hepatitis C Prevention, Support and Research Program. This mid-term review would not have been possible without their assistance.

Sincere thanks are also extended to Leslie Forrester and Gregory Zaniewski for providing epidemiologic and surveillance data analysis and Terri Buller-Taylor for producing the literature review. Thanks to Jane Wilson for her assistance in preparing the present report.

Finally, we would like to acknowledge the contribution of the Evaluation Advisory Committee:

Dr. John Blatherwick		Canadian Public Health Association
Dr. Sam Lee		Canadian Association for the Study of the Liver
Michel Perron		Canadian Centre on Substance Abuse
Biljana Potkonjak		Canadian Liver Foundation
Daniel Lapointe		Canadian Hemophilia Society
Leslie Forrester		Centre for Infectious Disease Prevention and Control - Health Canada
Timothy J. McClemont		Hepatitis C Society of Canada
Lillian Baaske		Population and Public Health Branch, Regional Office (BC) and Regional Lead - Hepatitis C
Rae Supeene		community member
Robert St-Pierre		Hepatitis C Prevention, Support and Research Program - Quebec Region
Mary Jane Buchanan		Hepatitis C Prevention, Support and Research Program - Alberta Region
Colleen Wickenheiser		Hepatitis C Prevention, Support and Research Program - British Columbia Region

The Project Team

William D. Murray		Manager Policy and Evaluation, Hepatitis C Division*
Brigitte Belanger McGuinty		Policy Analyst, Hepatitis C Division
Josie Sirna		Program Consultant, Hepatitis C Division
Pamela Martin		Policy Analyst, Hepatitis C Division
Geoff Cole		Evaluation Analyst, Departmental Program Evaluation Division

with the assistance of
Francine Plante-Lewis, Brenda Lalonde-Warner and Jennifer Allison

Chronology

Terms of reference approved	September 2001
Evaluation work begins	January 2002
Field work completed	June 2002
Draft report	September 2002
Evaluation Advisory Committee meeting	October 2002
Completion of revised draft report and working documents	December 2002
Submission to Audit and Evaluation Committee	March 2003

* Please note that since the completion of the report, the name of the Division has been changed to Community Acquired Infections Division, Hepatitis C Section. The former name has been kept throughout the report to reflect the context for the period covered by the report.

Executive Summary

Hepatitis C in Canada

The World Health Organization estimates that as much as 3% of the world population, or 170 million people, are infected with the hepatitis C virus. In Canada, the estimates are that more than 240,000 people, or 0.8% of the Canadian population, have been infected. Many infected people have no symptoms and are unaware of their condition; they are at risk of chronic liver disease and even liver cancer. Serious effects of this disease may not appear for decades after the initial infection.

Injection drug use has been documented as the primary risk factor in Canada. There is no vaccine for hepatitis C; however it can be treated and, today, treatment can result in sustained viral suppression for approximately 40% to 80% of cases, depending upon viral strain.

The Hepatitis C Prevention, Support and Research Program

The Hepatitis C Prevention, Support and Research Program was created following release of the report of the Krever Commission, which explored the safety of Canada’s blood supply. In 1998, the Government of Canada announced a comprehensive package of initiatives which included $50 million over five years to develop new disease prevention and community-based support programs and support research on hepatitis C. The Program has five components: Management, Policy, Evaluation and Public Involvement; Research; Care and Treatment Support; Prevention; and Community-based Support.

The Program aims to reach both primary and secondary clients: primary clients are those infected with, affected by or at risk of contracting hepatitis C; secondary clients are those individuals or organizations providing services to primary clients.

The Program Evaluation

An evaluation of the Program was completed in 2002 as part of a commitment to the principles of evidence-based program investment and the need to maintain accountability to the public. Planning for the evaluation began in June 2001 with development of the terms of reference; following that, the Program contracted with a consulting firm specializing in evaluation.

Methodology

The evaluation process involved a set of questions and indicators as developed in a customized Data Collection Matrix. These indicators were developed in the evaluation framework for the Program and were further refined for the actual evaluation. Both qualitative and quantitative data were collected from a wide variety of sources, including surveys, interviews, and reviews of documents and relevant literature.

The design of the evaluation was based on the use of a logic model, which represents the means by which the Program is expected to achieve outcomes. The model identifies the main components of the Program and depicts links between the main activities, outputs, and immediate, intermediate and long-term outcomes. To assess program performance the evaluation focused on four key areas: Scope of the Problem, Program Implementation, Achievement of Program Outcomes, and Program Lessons Learned.

The strengths of the process include the use of multiple sources to obtain data on the Program and the high response rates to all surveys and interviews. The chief limitation of the evaluation is that, at mid-point, the best that can be accomplished in a single examination is a general understanding of the Program outcomes and outcome achievement; it is not appropriate to expect a definitive statement about the success of the Program.

Findings

The program has demonstrated a broad strategic approach to program development at the the national level in response to hepatitis C.
Research capacity and knowledge about hepatitis C has increased with Program funding.
Research has been of high quality.
More behavioural and social science research is needed.
A large number of materials (e.g. patient information resources, training resources, resources for health professionals and others) were developed and disseminated.
There appear to be some challenges in accessing hepatitis C information that is appropriate in terms of literacy level and cultural appropriateness. As well, information needs to be consolidated in a central location.
Key partnerships have been developed with the Program at the national level, and evidence of partnerships and collaborative arrangements (e.g. partnerships with public health organizations, HIV/AIDS organizations and hepatitis C organizations) exists throughout all components of the Program.
Training was delivered to physicians, nurses, other health professionals and staff and volunteers.
Capacity to respond to hepatitis C at the community level has been improved; the number of projects, and staff and volunteers has increased.
High-priority populations are involved in project development.
Access to care and treatment is not uniform and continues to be an issue. Efforts have been developed by the Program to provide care and treatment support through the training of health professionals and at the local and regional level through community-based funding.
Public awareness of hepatitis C remains low.

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