Moving Population and Public Health Knowledge Into Action

Aboriginal health


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Developing a community health tool kit with Indigenous health organizations

Sylvia Abonyi, Saskatchewan Population Health and Evaluation Research Unit, University of Saskatchewan
Bonnie Jeffery, Saskatchewan Population Health and Evaluation Research Unit, University of Regina

The First Nations Health Development project developed a tool kit, including a community health framework and associated indicators, for use in monitoring Indigenous community health and wellness. Involving nine northern Saskatchewan communities, the Prince Albert Grand Council, the Athabasca Health Authority and researchers from multiple universities, the collaborative project specifically focused on understanding the impacts of physical and social environments on health and building capacity among research and community partners. The project's success was attributed in large part to the trust between partners, and an approach to knowledge translation driven by both community and academic needs and contributions.

Background

The First Nations Health Development project originated with senior health managers at the Prince Albert Grand CouncilFootnote * (PAGC) and the Athabasca Health Authority in northern Saskatchewan. These organizations wanted to better understand how health and other human services contributed to health (or "wellness" in the holistic meaning commonly attached to the term by Indigenous groups) and to determine, from the community viewpoint, the information that should be monitored to assess progress in community health and wellness.

The three-year project created a tool kit that outlines relevant community health domains in a comprehensive framework and suggests indicators to track progress in each domain. The tool kits are designed for use by managers and community-based staff in First Nations and provincial communities to create an evidence base to help guide program and policy decisions.

Our (Abonyi and Jeffery) involvement with the project began with a contract we held with the PAGC to conduct an evaluation of their transferred health services.Footnote ** The PAGC raised questions around Indigenous health frameworks and indicators beyond the scope and available funding for our mandated evaluation and we began to develop a funding proposal for a collaborative research project. The newly-formed Athabasca Health Authority also expressed an interest in participating and both organizations became collaborators. The project was ultimately funded by CIHR (the Institutes of Population and Public Health and Aboriginal Peoples' Health), the Saskatchewan Health Research Foundation and Northern Medical Services at the University of Saskatchewan.

The KT initiative

Our research initiative and associated knowledge translation (KT) activities specifically focused on understanding and addressing the impacts of physical and social environments on health, and building capacity: among members of a team of academics and community/organizational stakeholders; and for community/organizational stakeholders to use the research findings.

Our core research activities included a comprehensive literature review to develop a draft community health framework and indicators, followed by interviews and focus groups with health directors and managers from nine northern Saskatchewan communities—each composed of a majority of First Nations and Indigenous people—to develop and refine the draft materials.

Our research team included a large number of individuals with different levels of involvement. The day-to-day core team included the co-principal investigators (Abonyi and Jeffery), a research coordinator and research assistants. Participants with a lesser degree of involvement included collaborators from First Nations and provincial health organizations and health directors from First Nations communities, who were actively involved every one-to-two months in the ongoing development of the framework and indicators. Academic team members, including a multidisciplinary team of colleagues from a bi-university research unit and members of the Indigenous communication arts program at the First Nations University of Canada, were drawn in less frequently to review project materials and assist with dissemination activities.

The KT strategy to link partners working at these different levels together was always implicit and specific KT activities have evolved as the project progressed. We found that these activities must be brief, focused and relevant, and our most successful activities included a visual focus. For example, we used a logic model—a picture showing the linkages between objectives, activities, measures of success in completing activities and the resources required to complete the project—to visually describe the project's research objectives and associated activities.

We presented our results to academic and lay audiences in poster sessions. These posters also proved to be useful progress summaries for our community collaborators and were distributed as 11" x 17" versions. Face-to-face meetings between collaborators were important in the early stages of the project and continued at regular intervals. We are in the process of designing a public website for the project, which will include the tool kit, progress reports, presentations, posters and other deliverables that all team members can access. The final tool kit is also being produced as a hard copy manual and as an interactive CD for direct distribution to participant communities.

Results of the KT experience

These activities resulted in the organization of the final community health framework and associated indicators into a tool kit that can be adapted for use by individual communities. We began the project with the idea of producing a tool kit specific to each of the nine participating communities. However, we found that there was enough overlap in results to create a general tool kit that allows each community to select those indicators most appropriate for its local situation. The framework provides context and justification for the selection and use of indicators of interest.

The tool kit has already been piloted in one community, with an evaluative process to help us identify and address challenges with uptake before the final version is released. Recent opportunities to work with international colleagues also suggest a broader applicability for the tool kit.

Lessons learned

We have identified a number of factors to consider in planning research activities and facilitating KT through this project. These are not necessarily novel (they largely replicate good community practice known by non-researchers for decades), but they are worth some discussion within the framework of researcher/community relationships.

Building trust

Physically locating the research offices close to community collaborators—and outside the major academic setting—has proven to be beneficial.

Building trust is a central element of the research process and must be planned for. Issues to consider include the geographic location of research activities, researcher visibility, face-to-face interactions of the various partners, and the relevance of the research. Physically locating the research offices close to community collaborators—and outside the major academic setting—has proven to be beneficial. A high level of visibility is particularly important since, historically, Indigenous people gained little from academia, while researchers advanced their careers on what came to be seen as appropriated knowledge. The presence of researchers in the community, and working collaboratively with community leaders, has demonstrated our commitment to providing useful outcomes to local residents.

The competitive grant cycle hinders trust-building.

The competitive grant cycle hinders trust-building. During the time that elapses between proposal submission and funding (which for us was one year), community partner turnover may require relationships to be re-established when the project is funded. This is an essential but costly effort that we found we insufficiently accounted for initially in time and resources.

Involvement of community and academic collaborators

We found that the level of involvement of each partner needs to be carefully negotiated and formalized at the outset. We gained community consent through a negotiated "agreement to participate". This identified what we would return to the communities in the form of deliverables at specific points throughout the project (reports, tool kit, data ownership) and what we would ask from them with respect to their time, human resources and data.

The relationship with our academic collaborators was similarly negotiated. We asked each team member to identify particular aspects of the project they wished to be directly involved in and indicated deliverables for which we would be expecting feedback. However, we have been less successful with our academic colleagues, finding it especially challenging to keep them engaged in the midst of the myriad other projects they are more involved and invested in, particularly in light of shifting project timelines.

Faced with competing demands on our time, priority went to the community side of our KT strategy: the history and context of engaging in research with Indigenous peoples demands this. But we have learned that KT strategies are very different at community and academic levels and both must receive attention.

Collaborator readiness

For academics, readiness includes the recognition that a commitment to community partners may extend beyond the cycle of a single research project and the willingness to share control over the interpretation of results and dissemination activities with community partners.

For academics, readiness includes the willingness to share control over the interpretation of results and dissemination activities with community partners.

The level of community readiness to engage as a full partner in the research project influences both community ownership of the issue and trust building with academic researchers. In this project, the PAGC had 13 years of experience in managing its own health programs and the impetus for the research came from the PAGC itself.

Ongoing development of partnerships

The ongoing development of partnerships and engagement of the communities has been the most important activity in this project. As researchers, we learned that process and capacity activities that take place among partners during the proposal stages must be continued throughout the research process. This is especially significant in light of the differences between academic and community collaborator timelines and expectations.

Conclusions and implications

As a result of this project, we now intend to explore KT activities with community and academic collaborators in proposal development and at all stages of the research process, in a variety of community-based projects—the first of which is an extension of this project. Planning for KT activities, including capacity-building factors and activities at the proposal development stage, may require some innovative approaches to securing funding. Increasingly, however, we are finding that there are funding opportunities for proposal development that require a well-thought out strategy that accounts for the kinds of activities that, in the past, have begun only once a project is funded.

The Manitoba First Nations Centre for Aboriginal Health Research: Knowledge translation with Indigenous communities

Brenda Elias, PhD, Manitoba First Nations Centre for Aboriginal Health Research, University of Manitoba
John O'Neil, PhD, Department of Community Health Sciences, University of Manitoba

Knowledge translation at the Manitoba First Nations Centre for Aboriginal Health Research emerged through several population health research initiatives conducted in partnership with Canadian Indigenous peoples. An initial collaboration to carry out a regional health survey laid the foundation to share leadership, power and decision making, and resulted in a program to build capacity in the First Nations health planning community through familiarity with the tools and skills of health researchers. Connections between health researchers and First Nations health planners have since led to the incorporation of evidence-based decision making in many First Nations communities.

Background

Knowledge translation (KT) at the Manitoba First Nations Centre for Aboriginal Health Research (MFN-CAHR) involves the exchange, synthesis and ethically sound application of knowledge in a complex set of interactions among health jurisdictions, Indigenous groups, researchers, policy makers, program developers and health care service providers. MFN-CAHR's commitment to KT grew out of several population health research initiatives conducted in full partnership with Canadian Indigenous peoples.

Historically, First Nations health planners and service providers did not have access to trustworthy health information based on the best available research. Most health information was housed within universities and governments, which were inaccessible to First Nations communities. In the mid-1990s, MFN-CAHR and the Assembly of Manitoba Chiefs (AMC) entered into a research partnership with the Assembly of First Nations to implement the provincial component of the national First Nations Regional Longitudinal Health Survey.

A key KT product of this survey was the First Nations Applied Population Health Research Summer Institute, which introduced population health research approaches to First Nations health care directors and providers. Together, these initiatives contributed to new research and KT networks dedicated to reducing health disparities in First Nations communities in Manitoba.

The KT initiative

The partnership struck to carry out the regional health survey laid the foundation to share leadership, power and decision making from design to KT. The survey was successfully launched and achieved a high response rate.

At the dissemination stage of the survey, MFN-CAHR and AMC realized that First Nations health directors and providers would greatly benefit from an opportunity to work directly with the survey data to answer policy-related questions for their tribal areas and communities. Funding was secured from Health Canada's National Health Research and Development Program (NHRDP), and MFN-CAHR and AMC successfully offered the First Nations Applied Population Health Research Summer Institute for one week each summer over three years to First Nations health planners. The goal of the Institute was to build "receptor" capacity in the First Nations health planning community through familiarity with the tools and skills of health researchers. Additionally, the Institute sought to increase First Nations' interest in using the survey results by modelling the process of answering complex health policy questions through the data analysis process. For example, participants were asked to develop questions that they thought their communities would like to see answered (e.g. Who is most at risk for diabetes in the community?), and then survey and provincial health data were analyzed in a workshop format to answer such questions.

Today, MFN-CAHR and affiliated researchers and partners are engaged in a wide range of research activities designed to benefit Indigenous communities. Research now extends across the four pillars of CIHR (biomedical, clinical, health systems and services and population and public health), and reflects a strong participatory relationship with Indigenous communities in Manitoba, Canada, North America and internationally. Specific CIHR-funded projects include biomedical and clinical studies of diabetes, osteoporosis, rheumatoid arthritis and asthma; health systems studies of governance in community services; and broad investigations of the social determinants of community well-being, including studies of social capital, cultural continuity and resilience in the Aboriginal workforce. All of these studies involve Indigenous partners from planning and design through to implementation and dissemination.

Research users must exercise a degree of control or ownership over the research process if the results are to be seen as meaningful and useful.

Our KT model is based on the principle that research users must not only participate in the research process from the beginning, but must exercise a degree of control or ownership over the research process if the results are to be seen as meaningful and useful. We engage Indigenous groups, government policy makers, program developers and providers across multiple health jurisdictions, academic disciplines and research areas in a series of workshops and meetings to both guide the research process and ensure that potential users are familiar with the research results and their policy relevance.

Results of the KT experience

These initiatives have fostered new social connections between university-based health researchers and First Nations health planners and led to opportunities to incorporate evidence-based decision making in First Nations communities. Many First Nations health planners in Manitoba have now made population health research a critical part of their health governance structures and participate in research networks dedicated to addressing health disparities in First Nations communities.

These initiatives also fostered the development of health information systems. The creation of databases derived from both health surveys and provincial health care utilization data has been identified as a priority by First Nations authorities, who recognize the potential for building an evidence base for policy claims on different levels of government. Previously, this initiative was important only to university-based researchers, but the push is now mainly from the First Nations community.

The early success of the MFN-CAHR and AMC partnership has led to the development of new research space at the University of Manitoba, funded by the Canada Foundation for Innovation, and an Aboriginal Capacity and Development Research Environment grant from CIHR's Institute of Aboriginal Peoples' Health. Both of these grants emphasize the need for research to be structured by a university/community partnership, and for KT to be a critical aspect of all research activities. They also focus on capacity building by providing both space and resources to attract Aboriginal peoples into the health research process.

New research space and a dedicated research group have fostered new research networks, many of which have applied to CIHR to undertake studies with KT as a central component. New researchers now have access to the expertise required to establish successful research studies with Indigenous communities.

Lessons learned

Perhaps somewhat ironically, the success of our KT activities has led to a situation where the demands for researcher involvement in the First Nations policy and planning process have outstripped the capacity of researchers at MFN-CAHR to respond. First Nations authorities in Manitoba constantly need to generate information to support their claims on federal and provincial governments for health care resources. Expectations are now that MFN-CAHR resources can be deployed to answer some of these questions in timely ways, but the relationship has been threatened by the reality of equally compelling, university-based demands on the researchers.

Research grants from CIHR and other funders acknowledge the need for KT, but the time and cost of these activities are rarely funded at the necessary level.

Most importantly, much KT activity is still funded at the margins of research grants. MFN-CAHR receives no dedicated funds from any agency to support KT activities. Research grants from CIHR and other funders acknowledge the need for KT, but the time and cost of these activities are rarely funded at the necessary level. Researchers, particularly in a young organization, are also mindful of the realities of advancement in the university, which continue to reward traditional academic progress over community-oriented activities.

The ownership and control of research data is also a contested area. First Nations in Canada have established a set of principles known as OCAP (ownership, control, access and possession of research data) that they expect to govern the relationship between researchers and First Nations communities and authorities. MFN-CAHR was instrumental in developing these principles in the late 1990s in the context of implementing the regional health survey. Similar principles were included in the early research contracts between MFN-CAHR and the AMC, providing a foundation for the development of a trusting relationship.

Reaching agreement around OCAP principles, however, can delay and even curtail research and KT activities. In particular, "possession" of databases generated by provincial or federal data stewards is highly problematic, given confidentiality and privacy legislation. Data generated by researchers must also be protected for the privacy of research participants. Balance is required to avoid exclusionary approaches by either partner, which can foster distrust, lack of participation and conflict. The principles of mutual respect, the privacy and confidentiality of information at the individual and sub-group level and mechanisms for conflict resolution should therefore form an integral part of research agreements. Our experience suggests that, when an organization such as MFN-CAHR is trusted by all partners as an appropriate data steward, then OCAP issues fade somewhat into the background. But when the capacity for ongoing KT activities is limited, this trust can be compromised.

Conclusions and implications

Successful KT, conducted on the margins of research grants, should be celebrated, but it may not be sustainable.

The time and resources required for KT are significant and researchers and partners need to understand both the opportunities and limitations on this kind of activity. Researchers also need to be appropriately supported to make this investment, in terms of both funding and reward systems in the university and with partners. In addition, community partners require resources in order to engage effectively in the KT process. Successful KT, conducted on the margins of research grants, should be celebrated, but it may not be sustainable and may compromise the fundamental character of the partnership if expectations exceed capacity.

Understanding knowledge translation in an urban Inuit community


Dr. Janet Smylie, Indigenous Peoples' Health Research Centre
Kelly McShane, Institute of Population Health, University of Ottawa
Tungasuvvingat Inuit Family Resource Centre

Through a research partnership between researchers and an urban Ottawa Inuit community, this knowledge translation initiative engaged community stakeholders in planning and implementing a customized prenatal education intervention. By developing a community-specific knowledge translation framework, with a focus on capacity building, the partnership identified the most appropriate sources of health information and means of information dissemination, resulting in an interactive CD-ROM that responded to Inuit learning traditions and local knowledge systems. The success of the initiative has resulted in a continued commitment to an ongoing partnership.

Background

Successful knowledge translation (KT) activities must account for significant cultural differences, including contrasting notions of what knowledge is, between researcher and user communities. Yet there is a paucity of research on Indigenous models of KT in Canada. Indigenous researchers contend that imposed health services and programs are often misunderstood or rejected by Indigenous communities because biomedical knowledge frameworks are incongruent with local understandings of health and illness and local mechanisms for sharing knowledge.Footnote 1,Footnote 2

KT for Indigenous communities must, therefore, be premised on contextual cultural understandings. Others have advocated for understanding the user group, the issue, the research, the KT relationship and the dissemination strategies prior to developing knowledge sharing programs.Footnote 3 We would take this one step further by acknowledging the "user group" as the best source of information about cultural context, and working in partnership with this user group to support its leadership and participation in the KT process.

Our research team focuses on designing and testing models of KT in partnership with Aboriginal communities. Rates of infant mortality and preterm births are disproportionately elevated for Inuit compared to non-Inuit in Canada. Recognizing a problem in access to meaningful antenatal health information in the Ottawa Inuit community, we developed a KT initiative. The partners in this CIHR-funded initiative included the Tungasuvvingat Inuit Family Resource Centre (based in Ottawa), the University of Ottawa's Institute of Population Health, the National Aboriginal Health Organization and the Aboriginal Healing Foundation.

The KT initiative

Initial discussions between the community and researchers suggested that mainstream antenatal education programs were not providing the information that pregnant Inuit mothers and their partners needed and were not being presented through a culturally appropriate medium. Our objectives were, therefore, to identify and describe local systems of health information dissemination and use in the Ottawa Inuit community and to create and test a locally tailored prenatal education tool.

Building on a seven-year relationship as a primary health care provider to many community members, the principal investigator, Dr. Janet Smylie, initiated a research partnership. Over the next two years, a community research agreement was negotiated; focus groups, key informant interviews and reviews of existing prenatal educational tools were conducted; and a community-specific system of health information was developed.

Over the first phase of the project, community members and researchers documented existing knowledge systems and developed a community-specific KT framework. Community members articulated their learning styles and preferences for health information sources and dissemination, and researchers worked in partnership with them to create a KT model that reflected these characteristics.

The second phase of the project involved the development and evaluation of an interactive CD-ROM, which was identified as the best available medium of transmitting health information in the absence of Elders providing face-to-face teaching. The CD-ROM features an Inuit Elder giving prenatal teachings in the Inuktitut language.

We have included a strong evaluation component to assess which features of the KT process were the most important for community members. We have also included an assessment of the impact of the project on health information use and dissemination by key community health information stakeholders and an evaluation of the community-academic research partnership.

Results of the KT experience

The community-specific KT model we developed appears to be quite dissimilar to existing CIHR KT frameworks.Footnote 4,Footnote 5 In this strongly cohesive community, we found that informal networks of family and community were the most important source of health information and the best means of information dissemination. Also, it was clear that Inuit-specific health information was preferred, especially received from Elders.

Challenges to effective KT included reduced contact with Elders in the urban environment, the shortage of cultural interpreters and the paucity of educational tools in the preferred forms of communication (oral and/or visual). The community reported that most of the Elders lived in the North, with very few based in Ottawa. In response, we developed the interactive CD-ROM, the content of which matched the strong Inuit visual learning and oral traditions. Local knowledge systems were respected by having a community Elder independently prepare and deliver the message.

Our focus on capacity building—for both the researchers and the community—also yielded significant outcomes. Community members were empowered by being present and active throughout the research process, including the development of the community research agreement, data collection, data analysis, CD-ROM development and written and oral dissemination of results. They gained valuable insight and understanding into KT and health research in general. Researchers, for their part, developed their community-based research skills and learned about the local Ottawa Inuit community, Inuit culture, the Inuktitut language and traditional Inuit health knowledge.

In addition, two community members were engaged as research team members, and gained valuable skills in questionnaire development, translating/interpreting, data collection, data analysis and results dissemination. We made it a priority to have these community members participate in presenting research findings at conferences, which not only contributes to community capacity building, but also supports the credibility of the research.

Preliminary analyses of the CD-ROM reveal that it is extremely well received by the community. They particularly appreciate the fact that the message is in Inuktitut and that the tool has been developed by the community. To date, the evaluation of the community-academic partnership has demonstrated successful community engagement in the research process and the development of a respectful research partnership. This partnership carries with it a commitment to sustainability and respect for the community's long-term objectives and goals for its health care services. The continued commitment of all partners to this project, including the preparation of additional funding proposals for both research and health care infrastructure, provide further evidence of the partnership's success.

Lessons learned

Our experience has been an entirely positive one, but not without some challenges. Most notably, building a relationship takes time and ongoing investment from all parties. We found that negotiating the community research agreement was a good way to develop our academic-community research partnership, as it required a clear articulation of expectations, resources to be provided and protocols regarding ownership, control, access, possession and dissemination of information. More than anything else, the most valuable part of this process was the relationship developed between the academic researchers and community members.

We framed the relationship as a process of reciprocal knowledge exchange and, in order for it to be successful, continued patience, mutual respect, diligence and careful communication were required. At some points, the process needed to be slowed down or speeded up in order to match the needs of the community or the researchers, and discussions needed to take place on a regular basis to negotiate the details. Open, frequent and honest communication fostered and maintained a trusting relationship and also encouraged joint problem-solving strategies.

Community development approaches to health research will undoubtedly continue to challenge and transform existing academic research policies and protocols.

We found that there were tensions between traditional research granting mechanisms and the needs of the community. For instance, we encountered difficulties in arranging for community members to become salaried research assistants, a practice not typical of some granting agencies. Finding solutions that were acceptable to both the community and the university was challenging, and took time, effort and the willingness of both parties to negotiate. Community development approaches to health research will undoubtedly continue to challenge and transform existing academic research policies and protocols.

Another tension arose in integrating our KT research with existing front-line programming at the community site. The research needs and timelines did not always neatly fit into the existing job demands of the community staff. There was pressure on front-line workers to implement the research program, coupled with expectations that existing services would continue to be offered. Efforts had to be made to balance research needs with day-to-day service requirements.

Conclusions and implications

This project is part of a larger CIHR-funded study of KT in Aboriginal community contexts that has documented patterns of health information use and dissemination in three Aboriginal communities in Ontario—the Ottawa Inuit community and two others. Although several themes were common to all three, each community had unique contextual factors that influenced health information dissemination and utilization. Community consultations generated distinct data about health information sources and dissemination strategies, decision-making processes, locally relevant concepts of health, local health services and programs, community structures and mechanisms of interface with non-community systems.

Understanding local processes of knowledge creation, dissemination, and utilization is a necessary prerequisite to effective KT in Indigenous contexts.

These findings confirm that understanding local processes of knowledge creation, dissemination, and utilization is a necessary prerequisite to effective KT in Indigenous contexts. They also challenge current federal health promotion strategies that rely on pan-Aboriginal written health promotion tools, externally channelled to Aboriginal communities via stove-piped federal programs. They also suggest that formative understanding of local community knowledge systems may be important to health promotion more generally, particularly in cross-cultural settings.

The participatory partnership between academic researchers and community members in this KT project engaged key Inuit community health stakeholders in planning and implementing a customized public health intervention in a community-defined priority area. Similar success has been identified in the other two community KT pilot projects noted above, suggesting that these kinds of partnerships may be an effective method of engaging Aboriginal community members in KT activities more generally.

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