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Hepatitis C Prevention, Support and Research Program
Health Canada

Get the Facts: Mid-term evaluation report

VI. Summary and Recommendations

Since the Hepatitis C Prevention, Support and Research Program was created in 1999, many steps have been taken to promote awareness of hepatitis C, to assist in the provision of care and treatment, and to further research into management and prevention.

Much of the work of the Program has been developmental in nature; what is needed now is continued support to allow growth in all the programs, projects and initiatives that have begun.

The hundreds of thousands of Canadians infected with hepatitis C will continue to need care, treatment and support, and - given the high rate of new infections reported each year - a strong focus on prevention is needed urgently.

Recommendations

The mid-term evaluation provided a timely snapshot of the Program’s current status in its efforts to address the hepatitis C problem in Canada. It identified several areas of current and future direction for the Program with regard to its implementation, progress toward achieving outcomes, lessons learned, and upcoming fifth-year evaluation.

The review of the literature and Program documents along with responses from primary clients, secondary clients, staff, other stakeholders, health experts and researchers identified four key themes that characterize the magnitude and scope of the hepatitis C problem in Canada.

1. Hepatitis C infection is highest among people who have injected drugs:

Individuals who have injected drugs are at the highest risk of HCV infection. Populations such as street-involved youth, Aboriginal people, and inmates, who were identified by respondents as “hard-to-reach,” appear to be particularly at risk of HCV infection because of their involvement with drug injection and other skin-piercing activities.

2. Prevention efforts are needed to reduce the rate of new infections:

It is estimated that there are between 3,000 and 8,000 new hepatitis C infections occurring every year in Canada. Prevention and harm reduction efforts are most efficient if they are targeted toward those at greatest risk of contracting hepatitis C. Injection drug use continues to be the primary mode of hepatitis C transmission, but its root causes are not well understood. Furthermore, there is a need to improve the understanding of which hepatitis C prevention interventions and approaches are most effective with at-risk groups.

3. Limited access to physicians who are knowledgeable about hepatitis C:

Respondents who are infected with hepatitis C, as well as those who provide hepatitis C support services in the community, indicated that it is not easy to obtain care and treatment services from physicians. In particular, there is a limited number of liver/hepatitis C specialists in Canada, which results in long waiting periods for those seeking treatment. The lack of available services has a negative impact on the quality of life of infected individuals.

4. Public understanding and awareness of hepatitis C is low:

In addition to results from the polls of the Canadian public, every group interviewed or surveyed for the mid-term evaluation echoed the finding that public awareness of hepatitis C is low. Feedback from those who are infected with hepatitis C, as well as from those who provide support services to these individuals, indicates that this limited understanding on the part of the public has led to isolation and stigmatization.

Based on analysis of all the information collected during the course of this mid-term evaluation, the following recommendations are advanced with the objective of Program improvement.

Strategic Direction/Overall Assessment

The contaminated blood tragedy was the genesis of the Hepatitis C Program. Three years into its mandate, the Program has been successful in implementing numerous program activities to strengthen the Canadian response to hepatitis C. Surveillance data, however, show high hepatitis C rates among marginalized populations such as Aboriginal peoples, street youth, inmates and drug users. Addressing the multiple health determinants and disease challenges of diverse populations demands a coordinated strategy that promotes a multidisciplinary approach, linkages and partnerships.

Recommendation #1:

In the context of federal government priorities, it is recommended that continued federal leadership be considered in the broad areas of capacity building, research, surveillance and project/model evaluation. The knowledge generated from these activities will set the foundation for a coordinated, multidisciplinary approach able to meet the diverse needs of people infected through the blood supply and of marginalized populations.

Generation of Knowledge

The outlook for the generation of knowledge about hepatitis C through research is good. The findings of the mid-term evaluation demonstrated that as a result of the Program, a significant amount of money is available for research and that high-quality research – worthy of international presentation/publication – is being produced. Overall, however, researchers have only begun to scratch the surface of understanding the biology, pathogenesis, and treatment of the disease. Research aimed at understanding behaviours related to hepatitis C transmission is at an even earlier stage of development. Stakeholders highlighted the need for the government to maintain hepatitis C as a high-priority research area and to ensure that funding remains available even if the current Program sunsets. The evaluation also revealed that the relationship between the Program and CIHR has failed to encourage and support behavioural and social science research, and has not been sufficiently flexible in supporting the research necessary to answer questions that are critical to effective policy and program development. Finally, stakeholders expressed considerable concern regarding the large amount of research funding that lapses each year.

Recommendation #2:

With regard to research, it is recommended that

• Hepatitis C research continue to be a a major focus of the Program.

• The Program continue to monitor the joint Health Canada/CIHR research initiative on hepatitis C and guide CIHR to include an increased focus on behavioural and social science research while maintaining its current support for clinical/biomedical research.

• The Program retain a portion of research funds within the Hepatitis C Division to fund directed research for the purpose of answering those research questions critical to the development of effective hepatitis C policies and programs.

• the Program and CIHR work together to resolve the problem of mismatched funding cycles, communication and decision-making.

Partnerships

The outlook for the continued development of partnerships and collaborations is good given that the work done to date in all Program components was seen by respondents as successful. Relevancy issues have been identified, however, with some partnerships, for example, the existing partnerships with national non-governmental organizations and their ability to meet the needs of marginalized populations. In addition, other types of partnerships should be developed to enhance program effectiveness; for example, key partnerships at the intergovernmental, national and community levels.

The Population and Public Health Branch of Health Canada deals exclusively with the health issues of Aboriginal populations off-reserve, and the First Nations and Inuit Health Branch (FNIHB) supports the delivery of public health and health promotion services on-reserve and in Inuit communities. Issues of mobility tend to blur these distinctions at the community level, so it is important to coordinate funding and programming to best meet the needs of Aboriginal peoples.

Although health care services are the jurisdiction of the provinces and territories, there are many areas in which the federal government shares health care objectives, particularly in disease prevention and health promotion. It is therefore important that a strong level of cooperation and coordination exist between the federal government and the provinces and territories. The area of hepatitis C prevention, support and research is no exception, where the prevention and care needs of infected and at-risk Canadians demand an effective working relationship.

Recommendation #3:

It is recommended that the Program be more strategic about partnership development at the intergovernmental, national, regional, and community levels as identified below:

• Re-examine the current funding relationship with the national NGOs in terms of relevance, responsiveness, accountability and intra-organizational linkages.

• Strengthen linkages at the national level with the Office of Canada’s Drug Strategy, the Canadian Strategy on HIV/AIDS, Correctional Service Canada and, in particular, develop a strategic partnership with First Nations and Inuit Health Branch to ensure that programming is seamless for Aboriginal peoples on and off reserve.

• In order to strengthen and coordinate the federal, provincial and territorial response, the Program should establish a Federal/Provincial/Territorial mechanism (e.g. Working Group on hepatitis C).

Care and Treatment Support

At the case study sites, primary clients often reported long waiting times to see a specialist, long distance travel to major cities and excessive caseloads of treating physicians as barriers to care and treatment support. It was also observed that when high-priority populations are reached and an attempt is made to bring them into care or to provide prevention messages, the approach of some professionals may lack sensitivity, an appreciation of a person’s situation, or respect for an individual’s dignity.

Recommendation #4:

In order to address the need for additional health professionals who provide hepatitis C care and treatment, it is recommended that the federal government collaborate with P/Ts and professional associations in the development of capacity in the medical field. This would be accomplished through the provision of scholarships and fellowships to train specialists and through ongoing support for continuing medical/health education for family physicians and other health professionals.

Recommendation #5:

It is recommended that the Program continue to strengthen care, treatment and support for marginalized and under-served populations (including Aboriginal peoples, street-involved youth, people who inject drugs, and inmates) by educating health professionals about how to address the specific needs of these populations.

Communication and Information Exchange

It is critical to engage hepatitis C stakeholders - specifically, those infected with, affected by or at risk of contracting hepatitis C; hepatitis C service providers; and the public - in meaningful dialogue, both initially and on a continuing basis, to ensure that the Program is designed and is implemented appropriately. Feedback from respondents indicated that direct consultation with high-priority populations occurs at the level of the community-based support projects. Some stakeholders, however, did not feel that high-priority populations were heard regarding the Program’s delivery at the regional and national levels. Given the importance of understanding how to reach identified high-priority populations and enhance their involvement in research and prevention efforts, the following recommendation is proposed:

Recommendation #6:

It is recommended that the Program, at the national, regional, and community levels, strengthen the voices of high-priority populations (e.g. Aboriginal people, street-involved youth, drug users and inmates).

In all aspects of its conduct, the Program Advisory Group (PAG) is to represent the needs of individuals who are infected with, affected by and at risk of hepatitis C as well as the Canadian population in general. While the PAG has been an active Program committee, the evaluation has shown that it has been used primarily as a sounding board rather than as a conduit to bring stakeholder concerns, advice and direction to the Program.

Recommendation #7:

In order to ensure that the Program remains accountable, transparent and relevant, it is recommended that the Program specify a clear role for the Program Advisory Group (PAG) that defines an increased ability for the PAG to influence Program delivery, and that the composition of the PAG be augmented to include representation from priority populations (e.g. injection drug users, individuals in the corrections system, Aboriginal groups, youth, researchers and ethno-cultural communities).

While regional priorities helped to design regional strategies and project selection, many stakeholders indicated that there was not enough coordination either across regions or between regions and the national level. It appears that local project issues, models and/or lessons learned are rarely communicated either horizontally (to other regions) or vertically (to the national level). Similarly, the experiences within each of the five components are seldom shared. As a result, stakeholders are often uncertain about new developments.

Recommendation #8:

It is recommended that the Program implement mechanisms to facilitate communication and the exchange of information across Program components, across regions, and between national, regional and local levels.

Materials, information and research findings are being produced in greater numbers as the Program continues to develop. Therefore, it will be important to coordinate and disseminate these products. The material should be accessible to Program staff at all levels, as well as to stakeholders, physicians and other care providers, infected/affected/at-risk populations and the general public. Further, to save time and share lessons learned, community projects should have access to materials developed by other projects that they can then adapt to the needs of their own local high-priority populations. Not only must people have the means and know-how to obtain this varied information but the information must also be presented in ways that are sensitive to literacy, language and cultural needs. The possibility of using a non-governmental organization to operate a clearinghouse should be considered.

Recommendation #9:

It is recommended that a central repository or clearinghouse for hepatitis C information be established and, further, that efforts be made to make culturally appropriate hepatitis C information readily available.

Building Capacity

The outlook for the further development of hepatitis C capacity is favourable, given the significant efforts to date in the Community-based Support and Care and Treatment Support components of the Program. These are exemplified in the involvement of high-priority populations, the provision of training and development, and the development of staff and volunteers. The case studies, however, clearly indicate that continued community capacity building is essential in order to sustain the efforts of groups serving populations infected with/affected by or at risk of hepatitis C. The significant efforts and investment made to date will not come to fruition unless adequate time and resources are provided so that these small community groups can become embedded in local and provincial networks of care and can obtain ongoing funding.

Recommendation #10:

It is recommended that the Program support community groups for continued capacity building.

The many lessons learned by community-based projects in working with at-risk priority populations need to be studied, shared and replicated. Training and mentoring activities can foster the transfer of these learned skills and processes.

Recommendation #11:

It is recommended that the Program continue to support community development through its regional offices and support initiatives aimed at disseminating lessons learned, especially as they relate to interventions with marginalized populations.

Program Monitoring and Evaluation

The Program has been involved in a number of major initiatives, but this mid-term evaluation did not measure the impact of some activities. Before these initiatives are expanded or built upon, it is essential that the outcomes be appraised. Specifically, lessons learned from the first awareness campaign should be identifed and applied to any subsequent awareness initiatives, and the actual uptake and use of the practice guidelines prepared for health professionals need to be measured. Finally, looking to the future, it is important to put in place the strategic action plans and evaluation tools necessary to implement and chart the success of the work that will be occurring in the final year and a half of the Program’s five-year mandate.

Recommendation #12:

It is recommended that the Program design awareness activities with priority populations and measure the impact of these initiatives.

Recommendation #13:

It is recommended that implementation of the care and treatment guidelines that have been developed through funding by the Program be measured to determine the extent to which they are being adopted.

Recommendation #14:

As the program moves forward, it is recommended that

• strategic directions and action plans be developed that clearly link Program components and funding to Program objectives;

• progress towards objectives be reported annually in a streamlined, standardized manner;

• the Evaluation Logic Model and Data Collection Matrix be modified; and

• Program outcomes and impacts be identified that can be 1) measured, 2) attributed to the Program, and 3) reasonably expected to occur within the five-year time period.

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