Evaluation of the Hepatitis C prevention, support and research program 1999/2000 – 2005/2006

Hepatitis C Prevention, Support and Research Program
Community Acquired Infections Division
Centre for Communicable Diseases and Infection Control
Infectious Disease and Emergency Preparedness Branch
Public Health Agency of Canada
Ottawa, ON K1A 0K9

Published by authority of the Minister of Health.

Cat.: HP40-32/2008E
ISBN: 978-0662-48874-3

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Executive Summary

Table of Contents

1. Introduction
2. Background
   2.1 Surveillance
   2.2 Economic Burden
        References
   
3. Evolution of the Hepatitis C Prevention, Support and Research Program
   3.1 Program Reach - Target Population
   3.2 Program Logic Model and Mapping to the Centre for Infectious Disease and Prevention Control (CIDPC) – Community Acquired Infections Division (CAID) Program Activity Architecture (PAA)
   3.3 Situating the Program within PHAC
   3.4 Program Resources
   3.5 Program Evaluation
   
4. Final Program Evaluation
   4.1 Evaluation Context
   4.2 Purpose and Scope
   4.3 Areas of Enquiry
   4.4 Evaluation Challenges, Study Limitations
   4.5 Methodology
         References
   
5. Overview of Findings
   5.1 Program Design and Deliver
   5.2 Results and Achievements
   5.3 Strategic Alignment
   
6. Program Successes, Challenges, Gaps and Lessons Learned
   6.1 Successes, Challenges and Gaps Remaining
   6.2 Lessons Learned
   
7. Recommendations for Future Initiatives to Address Hepatitis C
   
8. List of Acronyms

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Executive Summary

Evaluation of the Hepatitis C Prevention, Support and Research Program

The Hepatitis C Prevention, Support and Research Program (the Program) was introduced in June 1999 in response to the Commission of Inquiry on the Blood System in Canada (Krever Commission). The original Hepatitis C Program was a $50 million, 5-year time-limited program spanning 1999/2000 - 2003/2004. The Program consisted of four main components including: research and surveillance; prevention and community-based support; care and awareness; and management, policy, evaluation and public involvement.

The Program has been extended three times (for approximately $10 million each year): a one-year extension to March 31, 2005 (approved in Budget 2004) to allow continuation of the Program's work while the Public Health Agency of Canada (PHAC) was being established; and an additional extension to March 31, 2006 (approved in Budget 2005) enabling the Program to operate while the PHAC developed an integrated framework for addressing infectious diseases. The evaluation covers the first two extension years. The Program is currently in another one-year extension (2006-07) which is not covered in this evaluation.

This evaluation demonstrates the progress made toward the Program goals and stated outcomes and identifies the priorities for future work in this area. The report provides an understanding of not only the accomplishments of the Hepatitis C Program, but its contribution to the overall mission, mandate and goals of the Public Health Agency of Canada (PHAC).

The Program was national in scope and shared responsibility in its delivery with the regional offices of Health Canada (subsequently the PHAC). The Program's four goals were: contribute to the prevention of hepatitis C virus (HCV); support persons infected with/affected by hepatitis C virus (HCV); provide a stronger evidence base for policy and programming decisions; and strengthen partners' capacity to address HCV in Canada.

This evaluation report provides information related to the background of the Program and the evaluation framework, findings, the Program successes, challenges, gaps and lessons learned, and recommendations. It situates this information in the broader context of the PHAC's overall mission, mandate and goals.

The evaluation framework consisted of three key issues areas and tested results and achievements against a range of questions as outlined here:

Operational Review: how did the system (bureaucracy), structure (Program, resources & managed practices), processes and support mechanisms contribute to the achievement of the Program's activities and outputs? What challenges were faced & what were the systemic barriers to success? How could these be addressed? How was accountability and transparency incorporated?

Results/Achievements: how did the Program contribute to enhance information & evidence across Canada? How did the Program support stakeholder engagement & support? How broad was the reach of the Program? What partnerships were developed? What new and/or innovative prevention and support projects were implemented? What results were achieved towards the Program's goals?

Strategic Alignment: what was the relevance of the Program to the federal government priorities; what was the relevance of the Program to the Agency’s priorities; to what extent did the Program implement a health promotion & population health approach?

Most importantly, the information gathered was evaluated in order to inform any future federal government policy and/or programmatic efforts. The results were analysed in the context of reach, successes (process, capacity; knowledge development & translation, spin-offs), gaps including lessons learned, challenges including lessons learned in order to form specific and directive recommendations.

The Report contains a document review of 276 nationally and regionally funded project files, publications and documents, including the mid-term evaluation and five-year review, which were analyzed to determine how well they reflect the main components of the Program. A comprehensive stakeholder survey was conducted and key informant interviews also contributed to the aggregate data analyzed to present a clear and consistent narrative. This information was compared to relevant epidemiological/surveillance data and HCV research that have contributed to an evidence base for the Program’s planning decisions. The Report addresses the breadth of issues related to the evaluation of the Program.

The Program made significant strides in its efforts to address the hepatitis C epidemic and has an impressive record of achievements including:

• extensive capacity building;
• increased research capacity;
• significant efforts toward prevention; and
• establishment of key partnerships/collaborations.

The Program also faced many challenges in its efforts to address the hepatitis C epidemic. These challenges often impeded, or at best slowed down progress in making further gains both at the national and regional levels. For example, there were systemic challenges in ensuring smooth funding cycles, particularly during extension years, creating significant lags in time and breaks in momentum in funding available through grants and contributions. It was often difficult for the Program to balance needs in prevention with those of care for individuals already infected. A truly national surveillance system that lacked ongoing evidence forced the Program to rely on predominantly sentinel surveillance. Improving behavioural and social science research proved to be difficult. Similarly, defining and ‘operationalizing’ a more integrated approach to HCV with related infectious diseases such as co-infection with HIV/AIDS, STIs and TB continue to challenge programmatic approaches.

As a result of this evaluation, the recommended future directions should:

• Ensure further programmatic interventions in order to stabilize, sustain, build on and increase the capacity and initiatives generated to date;
• Develop mechanisms for effective partnerships at all levels of government;
• Support collaboration between related issues (sexual health) and strategies;
• Build on the research capacity already established;
• Support current enhanced surveillance system activities;
• Emphasize increased public awareness; and
• Ensure a coordinated, evidence-based approach that is responsive to and inclusive of those most at risk and living with HCV including those providing care and support.

Summation
Given the significant achievements made in addressing HCV in Canada, as well as the need for ongoing vigilance, the federal government should continue the momentum of the past seven years by renewing its commitment for a sustained public health response to address hepatitis C and related infectious diseases.

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