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Hepatitis C Prevention, Support and Research Program
Health Canada

Get the Facts: Mid-term evaluation report

IV. Program Details and Implementation

In this section is a discussion of the key activities undertaken under the Program (as per the Logic Model, page 11). Information is provided with specific details for each of the five Program components. The key activities are as follows:

1. Consulting and collaborating with hepatitis C stakeholders;
2. Developing strategic directions and priorities;
3. Funding projects for prevention, support and research; and
4. Developing and disseminating information.

1. Consultation and Liaison with Hepatitis C Stakeholders

Engaging hepatitis C stakeholders - primary clients, health care providers and the public - in delivery of the Program has been a key guiding principle. By involving stakeholders, Health Canada ensures that the Program is relevant, responsible and transparent, and, most important, that the needs of primary clients are met.

Before the Program was designed, Health Canada officials met with various stakeholders including the Hepatitis C Society of Canada, the Canadian Hemophilia Society, the Canadian Liver Foundation, and the Thalassemia Foundation of Canada. Focus groups were held throughout Canada, in which people infected with or affected by hepatitis C participated. Health Canada also sponsored a national Consensus Conference and a researcher agenda workshop, and meetings with federal, provincial and territorial health officials. In addition, multiple meetings were held to discuss program design with representatives from Aboriginal peoples’ organizations and non-governmental organizations.

Stakeholder input was encouraged throughout Program implementation, with the inclusion of a consultation or feedback mechanism in each of the five Program components.

Management Component

This component is responsible for leadership and direction for the Program; a Program Advisory Group was established in 2000 with a mandate to

• assist the Program management team with direction setting;

• foster citizen engagement in Program implementation; and

• ensure complementarity and coordination of work by key sectors, organizations and institutions undertaking activities related to Program objectives.

The advisory group is a nine-member body with representatives from a variety of organizations (the Canadian Public Health Association and the Canadian Centre on Substance Abuse, for example), who represent the interests and needs of people infected with, affected by, and at risk of contracting hepatitis C.

Evaluation review: Minutes of Program Advisory Group meetings demonstrate direct consultation and discussion with representatives of the Program’s primary group on key issues in a timely manner; it is less clear, however, how the dialogues influenced implementation of the Program in practical terms.

Research Component

A Joint Advisory Committee is responsible for overseeing the granting of research funds, and relies on broad stakeholder representation. Members of this committee include individuals in clinical or biomedical practice and research, representatives of non-governmental organizations, an epidemiologist, plus representatives of Health Canada and the Canadian Institutes of Health Research. The committee reviews research grant applications against priorities set in June 1999 at a national research agenda meeting.

Evaluation review: The needs of the hepatitis C infected/affected community are well-represented on the committee. It was less clear that the committee represents the research needs of priority populations that are at risk of hepatitis C, such as injection drug users, street youth, Aboriginal peoples and people incarcerated in Canada’s prisons.

Care and Treatment Support Component

Mechanisms to determine the requirements for care and treatment support projects include needs assessments, focus groups and environmental scans.

Evaluation review: A survey of groups funded by the Program to do care and treatment support indicated that before the design of a project, consultations took place with a variety of groups including stakeholders and partners, government representatives and individuals infected with or affected by hepatitis C. Most organizations surveyed (82%) indicated that their priority population was involved in project development. A high-profile example of how the Program worked to consult widely and foster partnerships with stakeholder groups was the First Canadian Conference on Hepatitis C, which brought together more than 900 participants, including liver specialists, researchers, physicians, nurses, community workers, representatives of government health departments and non-governmental organizations, and people infected with or affected by hepatitis C. In the words of one presenter, the result was that “participants took the opportunity to move beyond listening and learning ... into planning and strategizing as a team, in the true spirit of synergy... the conference marked an important point in how our country has approached issues related to HCV.”¹³

Prevention Component

In this component, the purpose of consultation and liaison is to lead to partnerships and collaborations among government and non-government organizations that are doing, or could be doing, work toward prevention of the spread of hepatitis C.

Evaluation review: A document review identified that a scan of all organizations involved in hepatitis C initiatives was conducted early in the Program, including the identification of key players and potential partners. Consequently, many activities have been undertaken to further partnership development, including

• a partnership with the Canadian Centre on Substance Abuse to address knowledge gaps and, in particular, to address the issue of injection drug use;

• prevention-focused partnerships established with several agencies at the national level (e.g. Office of Canada’s Drug Strategy, Correctional Service Canada), and meetings held to establish partnerships within Health Canada and between Health Canada and national organizations; and

• a link established with the First Nations and Inuit Health Branch of Health Canada to work collaboratively in surveillance and research.

Community-based Support Component

In this component, ongoing consultation with stakeholders is intended to determine funding priorities for projects; in particular, consultations are held at the regional level with staff from community-based support projects and at the individual project level with priority groups.

Evaluation review: Interviews were conducted with Hepatitis C regional program staff and other stakeholders. The findings were that, in the main, staff consult with regional reference groups such as committees or networks (63%), community groups within their region (63%) and provincial/territorial agencies (38%). Individuals infected with or affected by hepatitis C and individuals who have injected drugs were also identified as groups consulted by program staff. Stakeholders interviewed were of the opinion that priority groups tend not to be involved in consultations beyond the project level, as these groups are difficult to reach. There appears to be a difference of perception between the groups interviewed in relation to the level of involvement of priority populations, and this may require future exploration by the Program.

At the local level, community project staff indicated that they do involve people infected with or affected by hepatitis C and injection drug users before designing a project (63%) and in the development of projects (69%), mostly through involvement in the community group’s board or advisory committee or in community consultation/focus groups.

2. Developing Strategic Directions and Priorities

Each program component has objectives designed to assist in setting priorities and strategic direction. The Management component determines direction for the Program overall.

Management Component

Objectives in this component are to

• provide leadership and strategic direction for the Program at a national level;

• promote horizontal integration and develop strategic partnerships to support Program goals; and

• ensure responsible, cost-effective management, promotion, delivery and evaluation of the Program.

Evaluation review: It has already been noted that the Program has successfully developed and sustained relationships with stakeholders and partners. Engaging priority populations has been more difficult because of the challenges in reaching out to these populations. It is also noted that there is no evidence that discussions held within the Program Advisory Group have any impact on the development of strategic direction. The Hepatitis C Division of Health Canada (which is responsible for administering the Program) has successfully developed horizontal linkages, and has kept the regions and other Health Canada departments informed; the Division has collaborated with stakeholders and built alliances to support Program objectives. Stakeholders who were surveyed commented that more challenges lie ahead in terms of the need for a clear national strategy, greater leadership and increased organizational capacity to deal with the disease.

The Program has demonstrated an ability to respond to emerging priorities at the regional and project levels through community groups. National progress reports from community-based support projects are used to inform strategic direction. Reporting was inconsistent in the first two years, and a standardized format was developed in the third year. Community groups have indicated that reporting based on diseases is burdensome. A review of reporting requirements might be warranted.

Research Component

As discussed, a list of research priorities was developed at a special meeting in June 1999 involving Health Canada and research agencies, including the Medical Research Council, now the Canadian Institutes of Health Research. The objectives in this component are to

• encourage and support research and the development and dissemination of knowledge about hepatitis C; and

• build commitment and capacity to conduct research in the research community in Canada to promote better understanding of hepatitis C.

Evaluation review: The Program sponsored high level events such as the Hepatitis C Open Forum and the First Canadian Conference on Hepatitis C; the Joint Advisory Committee has also advised Health Canada and the Canadian Institutes of Health Research on emerging issues, particularly those related to priority populations (injection drug users, youth, Aboriginal peoples and people in Canadian prisons).

Research in priority areas such as the biological nature of the virus and treatment of the disease have been funded. Behavioural and social science research, which are disciplines integral to effective prevention and treatment interventions, have been largely overlooked.

Care and Treatment Support Component

Objectives of the Care and Treatment Support component are to

• contribute toward efforts to enhance and promote the health and well-being of people infected with, affected by and at risk of contracting hepatitis C, to delay disease progression, and to improve their awareness and access to care, treatment and support; and

• build the commitment and capacity of key organizations and institutions to provide better care, treatment and support.

The goal of this component is to enable health care professionals and non-professional caregivers to provide care and treatment. This is accomplished by working with national professional organizations, professional associations and institutions such as the College of Family Physicians of Canada, the Canadian Nurses Association and the National Association of Friendship Centres, to name a few.

Evaluation review: Projects of broad national significance have been developed and implemented through Program associations and partnerships. Initial consultations with national organizations resulted in the development of an important list of required program activities, such as the development of hepatitis C care and treatment guidelines. (For more details, see Appendix 4.)

Prevention Component

Objectives of work ongoing in this component are to

• contribute to measures that will prevent the spread of the hepatitis C virus; and

• build the commitment and capacity of key sectors and institutions to pursue and support prevention measures in an integrated, collaborative way.

Strategic direction for this component was first determined by a national environmental scan undertaken to identify community and national-level HCV-related activities. At that time (late 1999 to early 2000) very few hepatitis C-specific activities were present in Canada. Strategic direction was also formulated through ongoing communication and consultation with partnering agencies such as the Office of Canada’s Drug Strategy and Correctional Service Canada. As well, key issues in prevention have been identified and explored through research, discussion papers, epidemiological studies and stakeholder input at the Hepatitis C Forum and the First Canadian Conference on Hepatitis C.

Evaluation review: As research and feedback from stakeholder groups identified and confirmed injection drug use as a primary risk factor for HCV, the Program strengthened its focus on injection drug use. Discussions with the First Nations and Inuit Health Branch resulted in the identification of the problem of injection drug use in Aboriginal populations. While on-reserve programming is a First Nations and Inuit Health Branch responsibility, it is recognized that collaboration and communication is important to achieve program objectives. The Program has demonstrated an ability to respond to changing priorities and unexpected developments.

Community-based Support Component

Building a strong, community-based response to the needs of people infected with, affected by and at risk of contracting hepatitis C is the focus in this component. Objectives are to

• contribute to a better understanding and appreciation of the nature and effects of hepatitis C among Canadians; and

• enhance the capacity of national, regional and local community organizations to provide support.

Evaluation review: Funding priorities are determined at the regional level and revised annually. The Program contributes funds for annual consultation/capacity building workshops which are integral to Health Canada’s approach to population health planning. These workshops may include information sessions, networking opportunities and group processes aimed at identifying lessons learned and future needs. This has helped regions to establish projects that reflect regional priorities and community needs.

3. Funding for Prevention, Support and Research Projects

The Program funds projects involved in research, care and treatment support, prevention and community-based support activities. Funding guidelines and criteria developed and applied, and the funding process and resulting activities will be discussed for each of the five components of the Program.

Research Component

Funding guidelines and criteria

Three major activities have been funded in this component.

1. Funds allocated to the Canadian Institutes of Health Research for hepatitis C research. This involves a memorandum of understanding between the Program and the Institutes wherein Health Canada provides funds to the Institutes that are then granted to researchers whose projects have met Health Canada/Institute standards and priorities. Over the five years of the Program, $12.34 million from Operations and Management funds have been allocated.
   
   
2. Program-driven epidemiological data-gathering not funded under other initiatives. This activity is intended to “top up” other surveillance activities, in particular those used to investigate special populations at risk of HCV, including injection drug users and Aboriginal peoples. Over the five years, $900,000 has been allocated.
   
   
3. Funds for special research initiatives. Funding is also provided for special research initiatives such as workshops or symposia; over five years, $496,000 was allocated for these initiatives.

Funding process and resulting activities

Health Canada provides the Canadian Institutes of Health Research with research funding at the beginning of each fiscal year. Between September 1999 and September 2001, 33 out of 86 applications for operating grants and 14 out of 15 career awards were approved for funding. Approval is based on scoring in a peer review process; high-scoring proposals are forwarded to the Program’s Joint Advisory Committee. (See Appendix 3 for list of key research accomplishments.)

Evaluation review: Funded researchers were surveyed as part of the evaluation process. The majority stated that the application process was clear (72%), that the time allowed for proposals was sufficient (64%), and peer reviewer comments were constructive (63%).

National staff, regional staff and Program Advisory Group members as well as other stakeholders interviewed noted that the funding process has been problematic. The Canadian Institutes of Health Research have had difficulty forecasting expenditures. Funds are allocated in December, leaving the Program with a short time frame to disburse unallocated funds before the end of the fiscal year. Nevertheless, respondents were satisfied that the amount of funding available is significant. Eighty percent said that the funding was the prime factor facilitating their research; 24% said their projects would not have gone ahead without such funding.

Care and Treatment Support Component

Funding guidelines and criteria

The goal in this component is to enable health care professionals and non-professionals to provide the care and treatment necessary to support Canadians infected with, affected by or at risk of contracting hepatitis C. Over five years, $8.43 million was allocated to this component. Within the work of this component are four key activities.

1. Professional and non-professional education and training
2. Development of guidelines (best practice and health care)
3. Hepatitis C information dissemination
4. Hepatitis C networks

Funding process and resulting activities

The care and treatment of people infected with hepatitis C are in the jurisdiction of the provinces and territories; the program activities here are directed at national organizations that could potentially develop tools and training for caregivers. (See Appendix 4 for a list of key care and treatment support accomplishments.)

Evaluation review: Eleven of 15 funded organizations provided feedback. The majority indicated that the primary focus of their organization was education and awareness (82%), followed by prevention (55%), research (36%) and care and treatment support services (36%). All indicated that they are active in developing resources and tools such as training manuals, treatment guidelines or brochures. Most were also funded to do training and skill development (82%). One hundred percent of the organizations responding said that receiving the funding was the factor that facilitated their project; 82% indicated that their project would not have been realized without it. Respondents noted that delayed funding was a factor that hindered implementation of their project.

The evaluation did not include an assessment of these activities.

Prevention Component

Funding guidelines and criteria

The aim of funding here is to contribute to measures that will prevent the spread of hepatitis C, with particular emphasis on those at greatest risk.

Funding process and resulting activities

Identification of prevention initiatives was based on directions in the Treasury Board Submission and on the basis of gaps identified in the environmental scan done at the outset of the Program. (See Appendix 5 for list of key prevention accomplishments.)

Evaluation review: Multiple initiatives have been enacted, including fact sheets and brochures produced for the general public and priority populations, surveys conducted to assess knowledge on risk factors and at-risk populations and discussion papers presenting the international perspective on HCV prevention and harm reduction to guide the advancement of prevention and treatment of hepatitis C in Canada. As well, inter-sectoral collaborations have been developed, and prevention-focused partnerships have been created at the national level.

In case study locations, early outcome results have included: improved knowledge of risk factors, prevention and harm reduction strategies as reported by primary clients; the improved ability to follow a full course of treatment as a result of support and information provided; the adoption of better nutritional habits and the opportunity to make referrals to other services for marginalized and street involved populations.

Community-based Support Component

Funding guidelines and criteria

Overall funding ($18.06 million) in this component is aimed at strengthening the participation of communities with two categories of funding: operation funding for national organizations and project funding for regional and local community-based groups. Operational funding provided a total of $2.7 million over five years, which was given to three national organizations: the Hepatitis C Society of Canada, the Canadian Hemophilia Society and the Canadian Liver Foundation. Project funding for regional and local community-based groups was administered regionally;149 projects were funded throughout Canada.

Funding process and resulting activities

Three objectives for providing operational funding to national organizations under the Program were to

• strengthen the capacity of community-based groups to respond to the needs of people infected with, affected by or at risk of hepatitis C;

• strengthen communication with the membership, other community-based groups, and other sectors; and

• strengthen collaboration with local chapters, other community-based groups and other sectors.

Project funding for regional and local community-based groups was administered regionally. Through a calculation based on population and estimated prevalence of HCV, each region received an allocation of funds for the purposes of supporting local and regional community-based groups working in the area of hepatitis C. (See Appendix 6 for summary of activities.) Detailed information on the activities are also presented in the various technical reports.

Evaluation review: The three national non-governmental organizations were funded for some similar activities; respondents to the National Staff, Regional Staff and Advisory Group Interviews indicated that there had been some duplication of activities. Participants in the Other Stakeholder Interviews, however, said that the duplication was more a matter of a lack of collaboration among the organizations than actual duplication, and that each organization deals with a different but possibly overlapping priority group. The other stakeholders added that efforts to establish partnerships have been resource-intensive and at times counter-productive to their organization. Representatives of the non-governmental organizations supported the idea that the funding had worked toward building capacity across Canada.

At the local and regional level, respondents in the Community-based Support Program Implementation and Outcome Achievement Survey were satisfied with the application process (63%); the majority of projects focused on education and awareness (62%). The most common factor that allowed the project to proceed was the Program funding (90%). Key accomplishments listed were as follows: resources and tools developed; training and development activities; information and awareness activities; support activities; networking partnership activities; activities to strengthen organizations; and needs assessments.

4. Developing and Disseminating Information on Hepatitis C

Developing and sharing information on hepatitis C is a part of the work of each of the five Program components. The objectives are to guide the work done in all Program components; to inform physicians, nurses and other caregivers as well as people infected with and affected by hepatitis C about treatment options; and to inform Canadians generally about hepatitis C.

Management Component

Developing a public awareness campaign for hepatitis C involved development of key messages, testing the messages and then launching a public campaign (Get the facts) in 2002.

Evaluation review: There were many changes in the plans to enact a public information campaign as a result of the challenges in getting agreement on what the priority messages should be.

Research Component

Evaluation review: More than two-thirds (68%) of those who completed the Researcher Implementation and Outcome Achievement Survey had shared information about hepatitis C through 109 presentations. Most of these were at international conferences or symposia (76%), and 64% reported presenting at a Canadian research event. In addition, 32% of respondents said they had published the results of their research, mostly (63%) in peer-reviewed journals, including respected international journals such as Clinical Biochemistry, Journal of Medical Virology, and the Journal of Viral Hepatitis.

Care and Treatment Support Component

Evaluation review: Funded activities included resource or tool development (100% of the organizations surveyed), and training and skill development (82% of organizations). Specific materials developed were brochures/pamphlets; journal articles and special supplements to journals; training manuals; Web sites; learning modules; Web course; and a desk reference text for physicians. More than half the organizations involved in treatment and support provided hepatitis C-related training; a desk reference was provided to 35,000 physicians and training was offered to 12,000 individuals infected with, affected by or at risk of contracting hepatitis C.

Prevention and Community-based Support Components

Evaluation review: Of the 68 projects responding to the Community-based Support Program Implementation and Outcome Achievement Survey, the vast majority (97%) indicated active involvement in hepatitis C development activities and reported that the majority (80%) of activities were implemented exactly as planned. Brochures or pamphlets were the most common resource produced in these projects and covered the following areas: awareness information (89%); prevention information (81%); general information on hepatitis C (80%); issues associated with hepatitis C (59%); and populations at risk (56%).

Results of the Other Stakeholder Interview showed that duplication of efforts could occur in this specific area of resource development; there is a need for coordination. Health Canada staff noted that there are plans to create a “clearinghouse” to consolidate hepatitis C-related materials.

Dissemination activities were widely reported by organizations surveyed: 91% had distributed prevention information, and 89% had made presentations at the community level and project level (69%). Dissemination of information took various and sometimes innovative forms including

• theatre performances to nearly 10,000 people at 36 different venues in 2001-2002. Presentations were given at educational conferences, in correctional institutions, in high schools in the Prince Albert area, in over 20 northern communities and at the Aboriginal Winter and Summer Games.

• outreach services for the Aboriginal population in south western Alberta and the dissemination of educational material to raise awareness at the Aboriginal Conference on HIV/AIDS, HCV and harm reduction.

• the development of resources for youth at risk and the distribution of 1,200 HCV prevention resources during 24 street sweeps conducted in the course of one year in the downtown Vancouver area.

Needs assessments have already been noted as a common research activity; some survey respondents found this to be a duplication, whereas representatives of the community-based support projects said they found the activity useful in targeting their activities.

Training processes were also reported frequently in the surveys and interviews: 96% of the projects reported providing hepatitis C-related training. Recipients of training were staff, health professionals, and volunteers.

Key points

• Consultation and liaison: there are many indications of the involvement of priority populations in strategic direction and project development; less clear is evidence of how discussions at the Program Advisory Group level influenced implementation, and there is ambiguity in stakeholder, staff and project perception about involvement of priority populations.

• Developing strategic direction: stakeholders cited the need for a clear national strategy, stronger leadership and increased organizational capacity; the Program sponsored several high level planning events and projects of broad national significance; and, research and feedback confirmed injection drug use as a primary risk factor for hepatitis C.

• Funding for prevention, support and research: a mismatch between funding cycles for the Canadian Institutes of Health Research has resulted in some examples of lapsed funding; the majority of organizations have been active in creating resource materials, but the effectiveness of these materials has yet to be assessed; and some duplication has been observed among the three non-governmental organizations, but in general, capacity has been built.

• Development and dissemination of information: the majority of funded researchers have shared knowledge, and the majority of community-based support groups have prepared resources; there appears to be a need for coordination of resources; and the majority of funded projects delivered training on hepatitis C.

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13. Minuk,G. 2001. Proceedings. First Canadian Conference on Hepatitis C. P.4.

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