Appendix D: Case Study Reports

[ Table of Contents ]

Canadian Institutes of Health Research HIV/AIDS
Community-Based Research Program Evaluation

Case Study Report: Catalyst Grant, Pauktuutit Inuit Women of Canada

March 2, 2009

Prepared for Canadian Institutes of Health Research

Table of Contents

• 1.0 Introduction
• 2.0 Methodology
• 3.0 Findings
  • 3.1 Project overview
  • 3.2 Experience with the HIV/AIDS CBR Program
  • 3.3 Application for a CBR operating grant
• 4.0 Conclusion

Annex A: Interview Guide

1.0 Introduction

The HIV/AIDS Community-Based Research (CBR) Program, transferred to the Canadian Institutes of Health Research (CIHR) from Health Canada in 2004, "supports research and capacity-building initiatives of relevance to communities engaged in the fight against HIV/AIDS" (Institute of Infection and Immunity, n.d.). The CIHR Institute of Infection and Immunity (III) administers the HIV/AIDS CBR Program, with support from the CIHR Institute of Aboriginal Peoples' Health (IAPH).

The CIHR HIV/AIDS CBR Program funds research relevant to the needs of communities and aligns with the Federal Initiative to Address HIV/AIDS. With an annual budget of $3.3 million, the HIV/AIDS CBR Program funds two streams of research: a general stream and an Aboriginal stream. Six types of funding tools are available to applicants including catalyst grants, operating grants, capacity-building workshops in HIV/AIDS, Master's research awards, Doctoral research awards, and Research Facilitators in HIV/AIDS.

CIHR hired PRA Inc. to evaluate the HIV/AIDS CBR Program and its funding tools. The purpose of the evaluation is to assess the program rationale, the effectiveness of its design and delivery processes, and its successes. CIHR will use the evaluation results to strengthen the HIV/AIDS CBR Program and maximize its impact on Canada's response to the HIV/AIDS epidemic. The methodology for the evaluation comprises five data collection methods: a document review, a file review, key informant interviews, case studies, and a stakeholder consultation. This document provides the case study findings of a catalyst grant funded through the HIV/AIDS CBR Program.

2.0 Methodology

The case study's purpose was to take an in-depth look at a catalyst grant funded through the HIV/AIDS CBR Program. The catalyst grants' objective is to support the development of "partnerships between the community and researchers to facilitate the conduct of community-based research" and "future applications for more comprehensive community-based research grants."¹⁴

In consultation with CIHR, the case study project was selected. The case study methodology included a file review and key informant interviews with members of the research team. The interview guide is in Annex A.

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3.0 Findings

This section provides the case study findings.

3.1 Project overview

Pauktuutit Inuit Women of Canada (PIWC) is a national non-profit charitable organization whose mandate is to "foster a greater awareness of the needs of Inuit women, and to encourage their participation in community, regional and national concerns in relation to social, cultural and economic development."¹⁵ PIWC represents all Inuit women in Canada and has been working with Inuit communities in the area of HIV prevention for the past 13 years.

PIWC, in partnership with Dalhousie University, applied for a CIHR HIV/AIDS CBR Program catalyst grant to "assess feasibility and establish community partnerships that will lay the foundation for the development of a multi-year research project that will explore the social determinants of health that contribute to HIV risk as well as access to testing, diagnosis, care and support in Inuit communities" (PIWC catalyst grant application, p. 9). In 2007, CIHR awarded PIWC a catalyst grant of $25,000 to complete this work.

3.1.1 Need

PIWC identified the need for this study as Aboriginal people, compared to other Canadians, are at higher-risk for contracting HIV. They found little documented research on the experiences of Inuit people in Canada was available. Additionally, PIWC was concerned that the statistics on the incidence of HIV in Inuit people are misleading because they tend to be embedded within statistics for Aboriginal people as a whole.

PIWC reported that Aboriginal people are three times more likely than non-Aboriginal people to contract HIV and are more likely to become infected a younger age. This increased risk partially stems from the historical marginalization and Western assimilation of Aboriginal people.

PIWC indicated that the HIV/AIDS epidemic is more dire in Inuit communities compared to other Aboriginal communities. They explained that Inuit people are at greater risk for contracting HIV because they tend to live in remote areas and have limited access to anonymous testing and diagnosis, prevention, and treatment services.

3.1.2 Goals and objectives

The goals of the catalyst grant were to:

• "reduce the spread of HIV and improve access to prevention, diagnosis, care, treatment and support for Inuit [people] infected with or affected by HIV"
• "develop a successful and achievable CBR grant that will enable the community and researchers to develop a research agenda that addresses the issues of HIV/AIDS awareness, screening, treatment and prevention among Inuit youth in Canada" (PIWC catalsyt grant application, p. 12b).

The objectives of the project were to:

• ".explore issues surrounding HIV/AIDS research in Inuit communities"
• develop the research capacity to carry out a larger community-based research project"
• hold a series of workshops and focus group sessions at the time of the Canadian Aboriginal AIDS Network (CAAN) Annual General Meeting (AGM)." (PIWC catalyst grant application, p. 12b).

3.1.3 Methodology

The research team for this study included representatives of PIWC, Dalhousie University, the University of Ottawa, and Health Canada.

The research methodology incorporated a CBR approach and comprised the following tasks:

• An environmental scan and literature review that included an assessment of policy program gaps and an evaluation and comparative analysis of best-practice models for community engagement around HIV/AIDS issues. Dalhousie University hired a research assistant to complete the literature review.
• Engagement and outreach to establish community partners.
• A feasibility workshop and focus groups with community members. The research team developed a moderator's guide for the focus groups using the literature review results and consultations with community members. The focus groups explored "access to testing and treatment, perceptions and stereotypes about HIV/AIDS, sexual behaviour and networks among and within communities, barriers to researching HIV/AIDS, and other determinants of health" (PIWC catalsyt grant final report, p. 4).

Originally, the focus groups were to take place during CAAN's AGM; however, the AGM was cancelled. As a result, the focus groups were held in three Inuit communities: Montreal (urban), Iqaluit (semi-remote), and Arivat (remote). Community Health Representatives recruited participants for the groups and the Pauktuutit Sexual Health program team facilitated the discussions. As appropriate, the Inuktitut language was used to conduct the groups. The research team sent the focus group results back to the community to verify that they had accurately reflected the themes discussed.

PIWC prepared a proposal for a CIHR HIV/AIDS CBR operating grant using the catalyst grant research results.

3.1.4 Results

Through the catalyst grant, the research team verified the need for "Inuit-centric HIV prevention education" and screening, diagnosis, and care services that are based on Inuit understandings about health and well-being. This need results from Inuit's distrust of the health care system, rotating health care professionals, and language and cultural barriers between Inuit patients and health care providers. Additionally, some of the other factors placing Inuit people at higher risk for contracting HIV are limited availability of sexual education in school curriculums and high rates of teen pregnancy, abuse, and addiction.

The catalyst grant resulted in the development of a strong network of community members, Inuit organizations, groups, and academics. It also raised awareness of HIV in Inuit communities and has encouraged community members to consider the linkages between the work they are doing in areas such as education, housing, health, and HIV.

The catalyst grant culminated with the submission of an application for a CIHR operating grant to "examine the complex interplay between culture, youth health and gender empowerment regarding HIV/AIDS risk within Inuit communities, and to determine research priorities for a multi-year study" (PIWC catalyst grant final report, p. 3). However, the funding application was not successful.

3.2 Experience with the HIV/AIDS CBR Program

This section reports on PIWC's experience with the HIV/AIDS CBR Program. PIWC submitted its initial application for funding in October 2006 and received a letter stating that the application was approved in February 2007. CIHR released the approved funding to PIWC in August 2007.

3.2.1 Completing the application form

PIWC developed the idea for the research proposal and contacted Dalhousie University to see if they were interested in partnerning on the project. The staff member at PIWC who identified the research need had read some publications that a Dalhousie University researcher had prepared on sexually transmitted infections (STIs) in Inuit communities. This researcher agreed to partner with PIWC on the project.

PIWC took the lead in preparing the funding application. The staff member at PIWC who led the application process had previously worked at Dalhousie University and had been involved in preparing CIHR funding applications. Key informants said it is not common for someone working at a community organization to have this experience. They also reported that without this experience, PIWC would likely have found the application process too complex and daunting.

PIWC and Dalhousie University worked with a CBR research facilitator (CBRF) to complete the application process. Key informants reported that the CBRF acted as a liaison between the community organization and the academic institution and assisted with the wording of the application.

PIWC prepared the CVs required for community members. They indicated that it was sometimes difficult to know where and how traditional knowledge and experiences could be included in the CV. They also explained that this knowledge is not always recorded on paper, as the knowledge is not learned in schools, but rather is passed down from Elders and other family members.

Proponents found the application process arduous and time consuming. They reported that it was difficult to engage the community in the proposal process, especially because of geographical separation. Therefore, rather than having in-person meetings with community members, applicants relied on phone and email, which can be ineffective when working with Inuit communities. The proponents also mentioned having to do significant work with the community to show them how HIV prevention relates to the work they are doing.

3.2.2 Merit Review

The application received a scientific merit rating of 4.1 and a potential impact rating of 4.4, for a final rating of 4.25 out of 4.9. The Merit Review Committee identified several strengths of the proposal including the importance of gathering epidemiological data among Inuit populations, the need to develop appropriate programs and expand health care options, connections to Circumpolar Health, and strong community and regional support. The committee also found there was a good network of support in place, the research team had a good understanding of CBR and the risk factors associated with the project, the openness to using a community process, and the inclusion of Elders. The committee had some concerns that the research position was held by a person in Ottawa and only three community members were financially supported to attend the workshop. They also noted the lack of sufficient detail around the methodological processes that would be used to complete the research.

3.2.3 Obtaining ethics certification and obtaining approval to hold CIHR funds

In the initial stages of this project, it was not clear whether ethics certification was required for the catalyst grant or if it was only necessary once funding for a full operating grant was issued. In April 2007, PIWC received correspondence from CIHR indicating ethics certification was not required for the grant and therefore funding would be released once PIWC's eligibility to administer CIHR funds was determined by its finance department.

In March 2007, CIHR sent PIWC its application to administer CIHR funds. PIWC completed and submitted the application to CIHR in June 2007. In July 2007, CIHR contacted PIWC and indicated that in order to approve PIWC's application to administer the funding, PIWC needed to show CIHR that it had obtained ethics certification and had an Ethical Integrity Policy. This information conflicted with what CIHR had previously told PIWC.

In August 2007, CIHR sent PIWC a letter indicating that they would release the catalyst grant funding even though PIWC did not meet all of the requirements.

3.3 Application for a CBR operating grant

The operating grant was intended to "reduce the spread of HIV among Inuit in Canada and to enhance access to diagnosis, care and support for those infected and affected by HIV" (PIWC operating grant application, p. 9). The project's objective is to "allow the consultation discussions during the proposal development phase to guide the design of methods and tools to collect data from Inuit to identify and document unique realities of Inuit in terms of their access to and readiness for HIV prevention information, diagnosis, care, treatment and support within current contexts and existing capacities" (PIWC operating grant application, p. 9). This proposed project involved focus groups and interviews with Inuit people, interviews with community health representatives, other health professionals, and those involved in policy and decision-making. The applicants requested $135,000 in funding over three years.

The application for an operating grant received a scientific merit rating of 3.2 and a potential impact rating of 3.45, for a final rating of 3.33 out of 5. To receive funding, an application must receive a final rating of 3.5. The Merit Review Committee found the application addressed the Federal Initiative to Address HIV/AIDS, included a strong and diverse research team, and had significant potential for community impact. However, the committee identified several weaknesses with application. One weakness was a lack of clarity around the who the members of the proposed Advisory Committee were, what involvement they had in developing the proposal, and what their role in the project would be. Another weakness was insufficient incorporation of community-based steps in the methodology, a lack of information about how cultural protocols would be used (e.g., would workshops be delivered in the Inuit native language, would Inuit speakers deliver the workshops), and limited explanation about how the capacity of trainees would be built. The Merit Review Committee also asserted that youth input should have been incorporated in the methodology. Key informants noted that some of these issues may have resulted from the fact that the original team lead for the catalyst grant left PIWC part way through the project; this left the team with limited resources for preparing the operating grant proposal.

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4.0 Conclusion

Through the catalyst grant, PIWC and Dalhousie University formed an effective partnership and verified the need for culturally-appropriate HIV prevention, screening, diagnosis, and care services in Inuit communities. They successfully engaged community members in the research process and raised community awareness of the potential impact that HIV/AIDS can have on their people.

Although the catalyst grant led to the application for an operating grant, the proposed project was not funded. PIWC and Dalhousie University received feedback from the Merit Review Committee that could be incorporated in a subsequent funding application.

Bibliography

Institute of Infection and Immunity. (n.d.). HIV/AIDS Community-Based Research Program.

Pauktuutit Inuit Women of Canada. 2006. Catalyst grant application.

Pauktuutit Inuit Women of Canada. 2008. Catalyst grant final report.

Pauktuutit Inuit Women of Canada. 2008. Operating grant application.

Annex A: Interview Guide

Evaluation of the CIHR HIV/AIDS CBR Program Interview Guide for Case Studies

Your responses to these interview questions will be used to prepare a case study report on the impact of your research project. You will have the chance to review and comment on the report for your research project before it is submitted to the Canadian Institutes of Health Research (CIHR).

Introduction

1. Please describe how and why you/your organization became involved in HIV/AIDS research. (How long have you/has your organization been involved in addressing HIV/AIDS and/or community needs?)
2. How did you become aware of the CIHR HIV/AIDS CBR Program? In your opinion, what is the best way to promote the program to communities and academia?

   Project description and activities

3. What was the core need that led to this project? How did the project come about?
4. What were the original goals of the project? Did these goals change or evolve? If so, what were the reasons for these changes?
5. What was the total amount of funding your organization's project received from all funding sources? Could you tell us the breakdown of funding by source, including any in-kind contributions?
6. To what extent do you believe it would have been possible to carry out the project without funding from the HIV/AIDS CBR Program? Was CIHR funding instrumental in leveraging or accessing funding from other sources? Please explain.

   Implementation and project delivery

7. Did you work with a Community-Based Research Facilitator? If no, why not? If yes, how useful was the assistance you received?
8. Who did you collaborate with on your application? How were you and your collaborator each involved in identifying the research need and preparing the proposal?
9. How were you and your collaborator each involved in conducting the research and sharing the results with the community? Are there any factors that reduced the community's ability to be involved as an equal collaborator in the research? How might these factors be addressed?

   How did you find the application process? How easy or difficult was it for you to complete the registration and application forms? Were you able to provide all of the required information (i.e., CVs, research proposals, etc.)? Did you have any difficulty using the web forms? What changes, if any, would you suggest be made to the application process?

10. What challenges, if any, did you experience in meeting the conditions required for the funding to be released (e.g., obtaining ethics approval, providing budget forms, submitting revenue information)? How could CIHR have helped you address these challenges?
11. In your opinion, are the program's reporting requirements (e.g., interim reports, final reports, financial reports) reasonable? What challenges, if any, did you encounter in preparing these reports?
12. Did you experience any challenges in conducting the funded research? If yes, what were they and how did you address them?

    Project outcomes

13. How is your project expected to help communities address the HIV/AIDS issues they are facing?
14. Generally speaking, what have been the results of the project to date?
15. Were there any expected results that your project was not able to achieve? If so, what were these and why were they not achieved? Please explain.
16. What unintended results, if any, has your project had?
17. Has your organization measured the results of the project? How have you measured the results, and do you continue to monitor ongoing activity?
18. Have the results of the project been shared with those involved in the project? Have they been shared with other stakeholders and the broader community? What was the community's reaction to the project?
19. Have the results of the project been used to address issues in the community? If so, how?
20. Is this project expected to lead to future research? If yes, please describe the projects you plan to undertake.
21. Has the participation in the HIV/AIDS CBR Program had an effect on your/your organization's willingness and capacity to direct and/or conduct other research? If so, please describe these effects. For example, have you/your organization conducted other research as a result?

    Other comments

22. What do you believe the strengths and weaknesses of the HIV/AIDS CBR Program are?
23. Do you have any suggestions for how to improve the program?
24. If your organization were in a position to advise others on how to undertake a similar project, what advice would you provide them?
25. Would you apply again for HIV/AIDS CBR Program funding? Why or why not?
26. Is there anything you would like to add?

Thank you for participating in this study.

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Case Study Report: Community-based research facilitator, Coalition des organismes communautaires québécois de lutte contre le VIH/sida (COCQ-sida)

December 3, 2008

Prepared for Canadian Institutes of Health Research

Table of Contents

• 1.0 Introduction
• 2.0 Methodology
• 3.0 Main Findings
  • 3.1 COCQ-sida has been involved in community-based research since the 1990s
  • 3.2 Facilitator's role and activities
  • 3.3 Implementation of the HIV/AIDS CBRP
  • 3.4 Outcomes
  • 3.5 Effectiveness of the CBRF tool
• 4.0 Conclusion

Annex A: Interview Guides

1.0 Introduction

With their third funding competition over, the Canadian Institutes of Health Research (CIHR) undertook the evaluation of the HIV/AIDS Community-Based Research (CBR) Program. Responsibility for the HIV/AIDS CBR Program was transferred from Health Canada to CIHR in 2004. This program is part of the HIV/AIDS Research Initiative (which is supported by the Federal Initiative to Address HIV/AIDS in Canada) and is directed by the Institute of Infection and Immunity in partnership with the CIHR Institute of Aboriginal Peoples' Health.¹⁶

The HIV/AIDS CBR Program is divided into two research streams, namely, general and aboriginal, and has six financial support tools: operating grants, start-up grants, workshop grants, master's degree scholarships, doctoral scholarships, and Community-based Research Facilitator (CBRF) grants. The community-based research facilitator grants are a unique component of the HIV/AIDS CBR Program. Their purpose is community-based HIV/AIDS research capacity building in certain regions by providing community organizations the necessary funds for a CBRF. CBRFs work with regional organizations to design, plan and implement training and community-based HIV/AIDS research programs.¹⁷

2.0 Methodology

The methodology chosen for this summative evaluation includes case studies on each of the main research streams and some of the HIV/AIDS CBR Program funding tools, for a more in-depth study of programs that have benefited from funding opportunities. The cases to be studied were selected in cooperation with CIHR. PRA Inc. and CIHR sought the participation of the various organizations involved. One of these case studies examines grants given for the CBRF at the Coalition des organismes communautaires québécois de lutte contre le VIH/sida (COCQ-sida).

This report presents the main findings of this case study, following the examination of the HIV/AIDS CBRP administrative files related to the position of CBRF at COCQ-sida, and interviews conducted with the main stakeholders involved: COCQ-sida senior management, the individual who held the facilitator's position until just recently, as well as management of three community coalition member-organizations that were able to work closely with the facilitator.

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3.0 Main findings

3.1 COCQ-sida has been involved in community-based research since the 1990s

COCQ-sida is a provincial group that at this time includes 38 community-based organizations, 22 of which are located in the Greater Montreal region and 16 more throughout the province of Quebec. The organizations work primarily in prevention and various interventions in the fight against HIV/AIDS.

Collaboration between COCQ-sida, its member-organizations and certain researchers from Université du Québec à Montréal as well as Université de Montréal and Université Laval, has always been very lively and growing numbers of young researchers and graduate students at the master's degree and doctoral level have been made aware of, and are participating in, projects in the community setting.¹⁸

COCQ-sida began using the services of a community-based researcher for running its community-based research programs in 1995 and since 2000, has had the position of Research Technical Assistant (RTA). Since the late 1990s, the coalition has developed ties with researchers in Quebec as well as with Health Canada researchers in Ottawa, and according to the coalition's senior management, this was one of the precursors of the HIV/AIDS CBR Program as created at Health Canada prior to its transfer to CIHR.

The coalition's concept of the RTA, for building capacity of community-based organizations and the transfer of knowledge in the field of community-based research, directly met the objectives of the grant for the Community-Based Research Facilitator instituted by CIHR. The first call for applications from the CIHR HIV/AIDS CBR Program was launched in November 2004. At that time, the coalition applied for a grant from the HIV/AIDS CBR Program to obtain this additional support to the RTA's position for a first maximum period of two years. COCQ-sida's experience in the area of community-based research therefore enabled them to propose a protocol that was approved by CIHR and obtain a grant starting in January 2005. The coalition was subsequently able to renew this support ($80,000 per fiscal year) until March 2009, under the auspices of a new protocol dealing with its members' current community-based research needs. The coalition does not have financial support from other sources for this position.

The coalition's RTA position was filled by the same individual from January 2004 to February 2007; the replacement for this person then held the position from March 2007 until August 2008. Since the replacement's departure, the CBRF position has been vacant.

3.2 Facilitator's role and activities

For the 2007-2008 fiscal year, following the program evaluation, and an assessment of the milieu within the parameters set out in the last protocol between the COCQ-sida and CIHR, [translation] "the facilitator...and the [coalition's] executive director deemed that prioritizing the conceptualization, preparation and submission of community-based research projects", in order to "develop new partnerships and...consolidate the acquired knowledge in community-based research that has been gained over the years was relevant"¹⁹ in addition to other routine activities, is relevant. In fact, in addition to member organizations' routine capacity building activities, the facilitator had a specific role for further developing partnerships with universities and community groups for the purpose of revitalizing the coalition's community-based research program.

Although the member organizations had already been made aware of the importance of community-based research, these groups did not necessarily have ties with university researchers, and due to the personnel turnover rate that is inherent to assistance and intervention organizations, they were not all necessarily up to date with an in-depth understanding of community-based research nor the range of funding options offered by the HIV/AIDS CBR Program. Interesting the greatest number of researchers by demystifying community-based research, appealing to researchers in other related fields, presenting researchers and organizations opportunities for partnerships, as well as the funding opportunities offered through CIHR HIV/AIDS CBR programs were deemed essential. The facilitator thus took charge of representation activities, information sessions with organizations and providing direct information on the HIV/AIDS CBR Program, making direct use, in particular, of the CIHR website. The facilitator estimates that approximately 60% of his efforts were devoted to developing partnerships with university researchers, and 40% with the coalition's member organizations. The facilitator also worked with non member organizations, particularly abroad (AIDE in France and SIDA Genève in Switzerland) with a view to broadening the HIV/AIDS community-based research network.

In particular, the facilitator continued to develop or collaborate on, depending on needs, workshops entitled "Outillons-nous" for transferring COCQ-sida's knowledge, as well as offering workshops for developing community organizations' research capacities, like workshops on the data analysis software Statistical Package for the Social Sciences (SPSS). He also continued to concentrate on supporting member organizations wishing to develop and submit community-based research projects, often on the basis of meetings and individual follow-up. These activities took most of his attention during the CIHR call for applications periods.

Because he was concentrating on these activities with the HIV/AIDS CBR Program, the facilitator was not in a position to also lead his own research projects or participate in other research projects either with COCQ-sida or benefit from the financial support of other organizations, as had been the case in previous years²⁰. As for the coalition, 4 projects were submitted as principle applicant/investigator to the HIV/AIDS CBR Program over the course of the 2007-2008 fiscal year, one of which was selected.

3.3 Implementation of the HIV/AIDS CBR Program

Preparation and submission of research projects

The coalitions' member organizations indicate that they have always been systematically informed with regard to the CIHR HIV/AIDS CBR Program by COCQ-sida, and more recently, through the CBRF, where he explained in detail the process for developing and submitting community-based research projects.

The process for preparing and submitting community-based research project to the HIV/AIDS CBR Program is deemed too cumbersome by the COCQ-sida and its member organizations. They stress how difficult it is for a community-based organization to formulate a project according to the format and containing the various types of information required by the CIHR. Some feel that without joining forces with a CBRF or university researchers who are used to navigating this type of process, they would not manage to submit research projects. In a number of cases, it seems that for all practical purposes, the CBRF developed the research project himself for the member organizations.

Certain organizations emphasize that despite the CBRF's offer of support, the lack of resources did not allow them to become involved in this process. Some feel that they might be better prepared and in a position to become involved if the CBRF organized preparatory meetings for the calls for grant applications, as once the announcements are made, there is insufficient time allowed for development and submission. The COCQ-sida management, the facilitator and certain organizations underscored that the willingness of CIHR personnel to provide information and answer their questions was a critical contribution to developing projects that met the strict CIHR guidelines, and that without this willingness, it would be more difficult to find their way through the instructions and forms on the CIHR website. Finally, some stakeholders feel that the CIHR HIV/AIDS CBR Program is not sufficiently suited to the reality of community-based organizations and does not fairly evaluate their capacities for undertaking or participating in research work.

Some organizations would prefer a letter of intent as a first step in the process for submitting a research project, thus enabling them to validate the soundness of the investigation they wish to undertake before having to devote a great deal of effort to presenting the details of a research project proposal. It was also suggested that a certain amount of human or financial support be attached in order to facilitate the work involved in a detailed proposal.

Funding tools

The two year maximum period for which the HIV/AIDS CBR Program gives a grant for the community-based research facilitator is deemed too short. In fact, according to some stakeholders, this does not allow the CBRF to devote him- or herself adequately to helping the community to develop and implement its community-based research projects. Rather, it restricts the facilitator to concentrating on his or her own research work, which may have a negative impact on the vitality of research among community groups, and possibly the effectiveness of their work. A four or five year grant coupled with an annual activity report has been suggested.

With regard to other HIV/AIDS CBR Program funding tools, we note that maximum start-up grants as well as grants to graduate students are not high enough to attract individuals or organizations to embark on community-based HIV/AIDS research. Another barrier in this regard has been underscored, which is the requirement to hold a doctorate in order to apply as principle researcher - except for the CBRF's role.

3.4 Outcomes

The various stakeholders questioned were able to identify a number of outcomes related to the COCQ-sida CBRF's activities, which we have grouped according to the following themes.

Forming partnerships

Although some community-based COCQ-sida member organizations had previously formed partnerships in the area of community-based research with one or more university researchers, others state that they have only been able to form them with the facilitator acting as intermediary, with the facilitator establishing the links that some organizations feel they could not establish themselves due to lack of time or knowledge of the fields of interest of each of the parties. The organizations also believe that they have been able to form productive partnerships thanks to the facilitator. Depending on the organizations' primary concerns, the facilitator was in a position to steer a number of organizations toward partnerships that may not necessarily have emerged from their normal activities and networking.

Capacity building, planning and implementation

The coalition's management and the member organizations alike agree that organizations' development of research skills remains limited by a high staff turnover rate that affect most not-for-profit assistance and intervention organizations, especially in the in outlying areas. They admit that this work is never finished. Regarding the planning and implementation of research projects, some organizations feel that the CBRF was able to produce greater interest in their leaders in community-based research, to lead them to reflect on, formulate or fine-tune questions specific to research, particularly in terms of assessing the impact of their interventions, or in order to ensure that their concerns are appropriately reflected when collaborating with university researchers. The CBRF has coached a number of organizations through the process of preparing their questions, and the development and submission of research projects to government agencies, particularly CIHR and the Public Health Agency of Canada, and some contend that they probably would not have become involved had it not been for the facilitator's instructions and support.

Dissemination and use of research outcomes

Thanks to training provided by the facilitator and various workshops offered by COCQ-sida, the organizations feel that they are better equipped to analyze the outcomes of various studies, and even to adapt certain studies to their context or clientele. However, there is no way to measure the use of what is disseminated, either with regard to more structured dissemination activities by the CBRF's activities, or community-based organizations. It is nonetheless clear that the COCQ-sida member organizations were recently made aware of the usefulness of research outcomes in general for forming action plans based on probing data, developing or modifying their interventions to be more effective, and for developing and submitting other research projects to various funding agencies.

3.5 Effectiveness of the CBRF tool

Although the role of the CBRF in a provincial coalition like the COCQ-sida has allowed knowledge to be disseminated and regional community-based groups to have the same type of participation in community-based research as the groups in large urban centres, it would be a mistake to believe that the CBRF will manage to develop research projects that are specific to each of the community organizations. Some are too isolated, lack the necessary resources or do not have interested university researcher near their region.

It seems that the CBRF's effectiveness is all the greater if the individual in the position has previous experience and connections in the university or community research sector and is thus able to use his or her understanding of the objectives and field of interest of researchers to the benefit of the community-based research sector. Someone like this is in a position to better understand the CIHR HIV/AIDS CBR Program procedures, which are based on traditional scientific research. He or she is perceived as "opening doors" for community-based organizations. Beyond the objectives and procedures of this CBR Program tool, stakeholders have stressed the importance of having an experienced facilitator in the position as well as this person's ability to make research accessible.

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4.0 Conclusion

The coalition's management as well as the member organizations questioned have expressed their satisfaction with the assistance provided by the CBRF, who has helped demystify community-based research and make it more accessible. Some stakeholders emphasize that there is no reason for the community sector to be afraid to make proposals or become involved in research and that they are less likely to be at the mercy of university researchers wishing to study them rather than collaborate with them in research.

Annex A: Interview Guides

CIHR HIV/AIDS Community-Based Research Program Evaluation Case Study Interview Guide with Community-Based Research Facilitators Community-Based Research Facilitator (CBRF)

Your answers given during the interview will be used for a case study report on the impact of funding for community-based research facilitators. You will have the opportunity to examine and comment on this report before we submit it to CIHR.

Project activities

1. How would you define your role as community-based research facilitator (CBRF) within communities?
2. Generally, what types of mandates have you carried out as community-based research facilitator? Which communities and organizations have you worked with? What percentage of your work is related to communities' participation and what percentage is related to researchers' participation (example: universities)?
3. In your opinion, to what extent are communities and the university environment familiar with community-based research? Are they familiar with the HIV/AIDS CBRP, including its two research streams and six funding tools?
4. How have you promoted community-based research and the HIV/AIDS CBRP to communities and university environments? Can you suggest other ways to promote the Program?
5. What activities have you undertaken in order to:
   1. foster the creation of partnerships between communities and researchers?
   2. help communities build the capacity necessary for being in a better position to conduct and direct research?
   3. help communities develop and submit applications to the HIV/AIDS CBRP? How many applications have you helped with?
   4. promote the involvement of stakeholders in HIV/AIDS or other research in addition to that which is funded by HIV/AIDS CBRP?
   5. disseminate research outcomes to communities or interested individuals?
   6. assist stakeholders in using research outcomes to deal with community problems?

   Please provide specific examples to the extent possible.

6. In your role as facilitator, have you served as a member of a research team for projects that have received funding through the CIHR HIV/AIDS CBRP? If so, for how many projects? Which research activities have you collaborated on? What were the objectives of these projects and what impacts have they had on the community?
7. What unexpected outcomes, if applicable, have your activities as CBRF had on the community and on researchers?

   Relationship with CIHR

8. How would you describe your relationship with CIHR? What works well and what works less well?
9. What information on the CIHR HIV/AIDS CBRP have you obtained from CIHR? What additional information, if applicable, would be helpful?
10. To what degree do you find the annual community-based research facilitators' meeting useful? Would you change the structure or frequency of the meetings? If so, how?
11. What challenges have you faced in carrying out your role as CBRF? How can CIHR help you meet these challenges?

    Community participation in CIHR HIV/AIDS Community-Based Research Program

12. How have you helped communities and researchers through all the community-based research steps (particularly with regard to the steps for determining the research topic, developing the proposal, carrying out the research work and communicating the outcomes)? Are there obstacles to communities' participation, preventing them from collaborating on an equal footing with their partners in the university environment? What could be done to eliminate these obstacles?
13. How have you helped communities and researchers complete their CIHR registration forms? Does the ease of completing these applications vary from one funding tool to another? Are the applicants able to provide the required information and documents (CV, research proposal, etc.)? To your knowledge, do the communities have problems completing the electronic forms that are accessible on-line? What changes, if applicable, do you feel we should make to the application process?
14. In your opinion, have the applicants with whom you have worked, or your own organization experienced problems in meeting the conditions for obtaining funding? (e.g.: problems obtaining an ethics approval, producing budget formulas, presenting data on revenue)? If so, how could CIHR help applicants overcome these difficulties?
15. In your opinion, what factors could have a negative impact on communities or the university environment in submitting a request under the Program? Do these factors vary depending on the research area or funding tool? What could CIHR do to eliminate these problems?

    Other comments

16. Do you have any suggestions for improving the CBRF funding tool?
17. Do you have any suggestions for improving the other funding tools?
18. Have the funds provided by CIHR helped you obtain funding from other sources? Please explain your answer.
19. If you were to have the opportunity to advise others regarding the CBRF's role, what advice would you give?
20. Is there anything else you would like to add?

Thank you for your cooperation in this study.

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CIHR HIV/AIDS Community-Based Research Program Evaluation Case Study Interview Guide with Community-Based Research Facilitators Host Organization

Introduction

1. Please indicate what led your organization to participate in research on HIV/AIDS and/or community-based research, and why. (How long have you and your organization been working to fulfill needs for battling HIV/AIDS and/or needs within your community?)
2. How did you learn about the Canadian Institutes of Health Research (CIHR) HIV/AIDS Community-Based Research Program (CBRP)?

   HIV/AIDS CBRP implementation

3. Why did you decide to request funding for a community-based research facilitator?
4. Had you already recruited someone for the CBRF position when you made your funding request? How did you recruit a CBRF? What challenges did you have to face to fill the CBRF position?
5. How did you find the process you had to go through for submitting your request? How easy or difficult was it for you to complete the registration form and the application form? Were you able to provide all the information and documents requested (CV, research proposal, etc.)? Did you have problems completing the electronic forms available on-line? Did CIHR help you with the application/request process? What changes, if applicable, do you feel we should make to the application process?
6. What problems, if applicable, did you experience in meeting the conditions to obtain your funding (e.g.: problem obtaining ethics approval, producing budget formulas, presenting data on your revenues)? How could CIHR have helped you overcome these difficulties?
7. In your opinion, are the Program requirements in terms of reports (e.g.: interim reports, final reports, financial reports) reasonable? What problems, if applicable, did you (or the CBRF) experience in producing these reports?
8. How would you describe your organization's relationship with the CBRP and CIHR? What works well and what works less well?
9. Did your organization have any problems in having a CBRF? If so, what were the problems and how did you overcome them?
10. Did you have recourse to other funding sources besides HIV/AIDS CBRP for having a CBRF? Can you indicate the amount of funding received from each source, including in-kind contributions?

    Description of the project and activities

11. Initially, what was the purpose of having a CBRF? Did the purpose evolve or change over time? If so, why?
12. How would you define the CBRF's role within the communities?
13. In your opinion, to what degree does the HIV/AIDS CBRP - in its present form - meet communities' needs?
14. In your opinion, to what extent are communities and the university environment familiar with community-based research? Are they familiar with the HIV/AIDS CBRP, including its two research streams and six funding tools?
15. What percentage of his or her time does the CBRF devote to the CIHR HIV/AIDS Community-Based Research Program? What percentage of the CBRF's time is taken up by community participation and what percentage with researchers? (e.g.: universities)
16. Has the CBRF served as a member of a research team for projects that have received funding through the CIHR HIV/AIDS CBRP? If so, how many projects? What was his or her role in these projects?

    Project outcomes

17. With which communities and organizations has the CBRF worked? In your opinion, how has the CBRF helped:
    1. promote forming partnerships between communities and researchers?
    2. promote communities' development of research capacity so that they are in a better position to lead or carry out research?
    3. communities to develop and submit requests to the CIHR HIV/AIDS CBRP?
    4. encourage the interested parties to participate in HIV/AIDS research or research in other fields (in addition to those funded through the HIV/AIDS CBRP)?
    5. promote communication of outcomes within communities and to interested individuals?
    6. helped interested individuals use research outcomes to attempt to solve problems affecting the communities?

    Please provide specific examples of activities or projects to the extent possible.

18. Did the funding for the CBRF have any unexpected outcomes? If so, what were they?
19. How has the CBRF been successful? What has contributed to this success?
20. Has the contribution made under the HIV/AIDS CBRP enabled your organization to improve its capacity and willingness to lead and/or conduct other research? If so, please describe the impacts that the program has had (e.g.: Has it led your organization to undertake more research?).

    Other comments

21. Do you have any suggestions for improving the CBRF funding tool?
22. In your opinion, to what extent do you believe it would have been possible to recruit a CBRF without the HIV/AIDS CBRF funding? Were the funds provided by CIHR significant in helping you obtain funding from other sources? Please explain your answer.
23. If your organization were in a position to advise other organizations on how to undertake a similar project, what advice would you give them?
24. Would you apply for CBRF funding under the HIV/AIDS CBRP? Why?
25. Is there anything else you would like to add?

Thank you for your cooperation in this study.

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CIHR HIV/AIDS Community-Based Research Program Evaluation Case Study Interview Guide with Community-Based Research Facilitators Community Organizations

This is a general maintenance guide. All additional data that may be relevant for the evaluation are welcome. Please feel free not to answer certain questions if you do not have the information. Your answers during the interview will be used for a case study report on the impact of funding for community-based research facilitators.

There is a short information leaflet with the guide, which describes the goals of the evaluation and gives an overview of the federal initiative in the fight against HIV/AIDS in Canada, the Canadian Institutes of Health Research (CIHR) strategic plan, the research streams and funding tools that are part of the HIV/AIDS Community-Based Research Program (CBRP).

Participation in HIV/AIDS research

1. Please indicate what led your organization to participate in HIV/AIDS research and/or community-based research, and why. How long have you and your organization been working to fulfill needs in the fight against HIV/AIDS and/or needs within your community?
2. To what extent has your organization previously supported or conducted HIV/AIDS research? If applicable, which partners have worked with you in carrying out these projects? What funding resources did your have recourse to for completing the research?
3. In your opinion, has your organization requested funding from the HIV/AIDS CBRP? Why or why not?

   Participation of the community-based research facilitator

4. The community-based research facilitator is one of the HIV/AIDS CBRP streams. How did you learn about the community-based research facilitator at COCQ-Sida??
5. In your opinion, to what extent are the organizations in your community familiar with community-based research facilitators?
6. Why has your organization used the services of a community-based research facilitator? For example, what needs were identified by your organization?
7. What type of information or assistance did you or your organization receive from the community-based research facilitator? In particular,
   • Did you receive information on what community-based research is and how it is conducted?
   • Did you receive information on funding available from the HIV/AIDS CBRP?
   • Did you receive assistance identifying research needs? In finding a research partner? For submitting a funding request? Was this assistance related to a general project in community-based research or a CIHR community-based research project on HIV/AIDS?
   • What other assistance have you received?
8. How did you obtain information or assistance from a community-based research facilitator? Did you speak to the facilitator in person or by telephone? Did you attend a training session or workshop?
9. In general, how helpful was the assistance received from the community-based research facilitator? What other type of assistance could have been useful?
10. What were the consequences of the collaboration with the community-based research facilitator in your organization? In particular, through working with the CBRF, did your organization:
    1. Develop associations with university researchers?
    2. Increase its capacity to direct and conduct research?
    3. Develop research proposals and funding requests (for the HIV/AIDS CBRP or other programs)?
    4. Learn how to better disseminate research outcomes to the communities and other interested individuals or organizations?
    5. Manage to make better use of research outcomes for answering the community's questions?
    6. Were there any other consequences?
11. What is your vision of the community-based research facilitator's role? In your opinion, to what degree did the CBRF fill this role?
12. Are there factors that limit the use of the CBRF's services by HIV/AIDS stakeholders? If so, please describe them. What can CIHR do to reduce the impact of these factors?
13. What suggestions can you offer for improving the information or services available through the CBRF?
14. Do you have other suggestions regarding the HIV/AIDS CBRP?
15. Is there anything else you would like to add?

Thank you for your cooperation in this study.

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14. Canadian Institutes of Health Research. (2008). Most recent request for applications for each of the six CIHR HIV/AIDS CBR Program tools.

15. Pauktuutit Inuit Women of Canada. (2007). 2006-2007 Annual Report. Obtained on February 24, 2009.

16. Canadian Institutes of Health Research. Launch of HIV/AIDS Community-Based Research Program Evaluation - April 2008. Consulted November 2, 2008.

17. Canadian Institutes of Health Research. HIV/AIDS Community-Based Research Program. Consulted November 2, 2008.

18. Coalition des organismes communautaires québécois de lutte contre le VIH/sida. (2007). Rapport final : Programme de recherche communautaire sur le VIH/sida - Subvention pour assistants techniques de recherche - October 2007. p.1.

19. Coalition des organismes communautaires québécois de lutte contre le VIH/sida. (2008). Rapport provisoire : Programme de recherche communautaire sur le VIH/sida - Facilitateurs de la recherche communautaire - April 2008. p.2.

20. To avoid conflict of interest and ensure that CBR Facilitators are able to fulfill their key objective of developing capacity throughout their region they are not eligible (.) to engage in the conduct of research for any project funded by CIHR. Funding Opportunity Details - Other: Research Facilitators in HIV/AIDS (2008-2009) ARCHIVED.  Accessed on December 3, 2008.