Our Commitment: Access to Health Research

Participation and Empowerment of Aboriginal Peoples in Research to Improve Health and Well-being.

Aboriginal health continues to be a key area for research development and knowledge translation in Canada.Research and knowledge sharing are needed to address the ongoing health disparities in Canada’s Aboriginal peoples and in other indigenous societies.Health research and knowledge sharing will enable Aboriginal peoples to contribute to and indeed resolve these health issues through self-determination.

The Aboriginal Capacity and Developmental Research Environments program of the CIHR Institute of Aboriginal Peoples’ Health was launched in 2001.It was designed to address the major issue facing Aboriginal health research, namely the issue of insufficient capacity to carry out relevant research in this emerging field.This lack of capacity is apparent in the numbers of trainee researchers in the area of Aboriginal health.The lack of capacity is equally apparent in the limitations faced by Aboriginal communities in designing and carrying out health research that meets their needs.Capacity development is also needed for the wider cadre of academic health researchers to help them more effectively engage with Aboriginal peoples to address important health issues.As a network for Aboriginal health research, the Alberta NEAHRNetwork has progress to report in all three of these areas, and we continue to provide mentorship and support.However, more work needs to be done.This Network Environments for Aboriginal Health Research application will address capacity development requirements in all three of the key areas above.Our role as a network will be to facilitate, to bring people together – trainees with communities and academics – and create opportunities for research and knowledge sharing.The major themes for the new ACADRE-NEAHR grant application will include:

Transmitting the Message, Learning from Others: Knowledge transfer and exchange, community to community, community to university, and university to community, will allow the world, indigenous and non-indigenous, to know about Indigenous Peoples’ understanding of health and how to improve it.Learning from the experience of other indigenous peoples will lead to better health practice and outcomes.We have a body of knowledge developed within the network to communicate as well as to develop sustainable relationships with Indigenous communities.

Access to Health Research for Indigenous Peoples: This is a basic right of Indigenous Peoples.Health Research, conducted by and for Indigenous Peoples, represents the way forward to improving the health of Indigenous Peoples worldwide.Health research should not be relegated to the outside community; Indigenous communities need to take control of the agenda.This is the real indigenous health access theme – taking control of our own healthy future through research, capacity building and knowledge translation.Health is the end-product of capacity building.

Specific Themes: We anticipate that participatory action research projects might address the following:Access to culturally appropriate health care and services, urban and rural; Indigenous approaches to chronic conditions and care; Indigenous approaches to dealing with mental health issues; healthy living / resilience; environmental issues / connection to the land; traditional practice / healing; cultural awareness and cultural competency in health service delivery and in health research; social determinants of health – application to research and knowledge translation.

Our Principles for Aboriginal Health Research

The following principles build upon AlbertaCentre for Child, Family and Community Research (ACCFCR) values and practices, to which the AlbertaNEAHRhas contributed. Collectively, these principles form a foundation for Aboriginal health research supported by the Alberta NEAHR.

Research must benefit Aboriginal people.

Aboriginal communities should become aware of the need for health research and its potential to make a positive difference in the community. Investigators must ensure that research is conceived, structured, and communicated so that the findings will benefit, not harm, Aboriginal people and their communities.

Research must be culturally appropriate and relevant to the community.

Aboriginal research must respect and reflect the culture and traditions of Aboriginal people. Researchers must work together with the community to establish research projects with objectives that are needed and relevant to the community, as well as develop ethical guidelines that ensure that research is conducted in a culturally appropriate way and is accountable on all levels.

Research should build upon the strengths of Aboriginal people and communities.

Research on Aboriginal concerns should focus on strengths rather than problems, and in seeking to resolve problematic situations within Aboriginal communities, researchers should take their cue from the Aboriginal culture. They should seek to raise awareness among Aboriginal people that problems can be solved and that research plays an essential role in identifying and remedying them.

Aboriginal people must be full participants in the research that affects them.

Aboriginal people need to be able to participate fully in identifying the problems in their communities and in developing priorities for research into the issues that affect their lives. They should have abundant and meaningful opportunities to make decisions about this research--opportunities that respect Aboriginal culture, traditions, and ceremony.

Aboriginal research capacity must be enhanced.

Aboriginal people must play an integral part in research on issues that affect their lives and communities, but they have to have opportunities to learn about the role of research, the research process, and be taught the skills to conduct the research. An Alberta cadre of well-trained Aboriginal researchers would ideally be best equipped to conduct Aboriginal research.

Effective partnerships strengthen the potential to conduct effective Aboriginal research.

Effective partnerships with the many other groups involved in research provide the opportunity to enhance the quality of Aboriginal research. The level of expertise in conducting Aboriginal research varies among these groups, such that all partners should gain from such collaboration.

Elders must be consulted about Aboriginal research conducted in their communities.

Elders are valued and respected members of the community. They maintain and teach traditional knowledge, give a perspective on the past and the future, andensure things are done in a proper and respectful way. As leaders within their communities, they must be consulted about research that is proposed or being conducted. At least one Elder should be part of the research team and involved in all stages of the research.

The different types of Aboriginal communities must be recognized.

Aboriginal communities are diverse in their background and makeup, ranging from groups bound together by their Aboriginal heritage to groups who happen to live together in one place. Protocols can vary from one community to another; the research team need to identify and honour them when building partnerships between the Aboriginal and academic communities.

Unique cultural issues that affect Aboriginal research must be considered and accommodated during the ethics process.

Cultural issues can affect the way research is structured and the strategies used in collecting data. The AAN will support only Aboriginal health research projects that have undergone an ethics development process that addresses and accommodates unique Aboriginal cultural considerations.

Research findings about Aboriginal people must be communicated to Aboriginal communities.

Researchers must communicate their findings to the Aboriginal communities who participated in the research project in a meaningful and accessible form. Research findings must be written in plain language that is easily understandable by all. They should also be translated into indigenous languages where relevant and requested by the community.

Aboriginal communities must have ownership and control of the research findings.

The Aboriginal community who participated in the research owns the data, and has the right to control its use and dissemination. Researchers must negotiate agreements covering sample collection and storage, data storage, data sharing, and future use of the data with the communities.