My community engagement began when I first started working with the St. Regis Mohawk tribe, known to them as the Akwesasne Mohawk. Initially they were involved in some studies with David Carpenter of the effects of PCB pollution. The tribal members were interested in expanding their studies into how the PCBs might be affecting the development of the children who had been exposed in utero or after birth.
The choice of the project and the methods to be used was developed from numerous discussions, proposals and evaluations between myself and Joan Newman of the School of Education and members of the tribe, particularly members who also were part of the Akwesasne Task Force on the Environment (ATFE) and their subcommittee, the Research Advisory Council. It was clear that the tribe and the ATFE had embraced certain principles of conduct and researchers who intended to work with people were to follow them.
The development of a project was not lead by this researcher. The process included a discussion of project ideas and methods, with those formed and reformed to suit community and researchers’ needs and wants. Eventually a plan was put in place and became part of the Superfund application to NIH lead by David Carpenter in 1994. It included 10 different projects of which only 2 concerned humans, mine with Joan Newman and another lead by Azara Santiago-Rivera.
After obtaining funds from NIH, the ATFE conducted a series of workshops to educate all researchers on what we now would call cultural competence. The Akwesasne principles of respect, equity and empowerment guided the conduct of the research. The projects were intended to do more than increase knowledge, something desired by both parties, but to also respect and improve the lives of the community. One very concrete improvement was the creation of jobs to perform research as data collection at Akwesasne was performed by members of the community after undergoing extensive training.
I readily accepted these ideas and principles. Knowing something of the history of attempted extermination of Native peoples, I felt that the goals of the ATFE were worthwhile and accepted them enthusiastically.
During the five years of the project that studied adolescents in the community, I co-wrote a paper about partnership research with Alice Tarbell who was supervising the data collection. Speaking in two distinct voices we spelled out what Native people had experienced through research collaborations and what needed to change. It was a lessons from the past and guidance for the future. One of the most important lessons was to include community people in all aspects of research from identifying a problem or topic to planning, conducting and writing up the results.
We also have conducted two additional studies. Each one was a response to community concerns and involved community people in the research planning, conduct and write up.
An important part of our community partnership approach has involved community meetings to present and discuss results. The last of these was held in December of 2014 and was attended by 150 people.
Since 1995 I have co-written three other papers on community engaged research but for different audiences. Each time I worked with a member of the Akwesasne community. This ensured that what was written was not offensive to the community and reflected the reality of their experience. Community people can provide valuable insights into the research problem and are a resource for the research.
The experience with the ATFE and the Akwesasne community as a whole prepared me to lead an application to the National Institutes of Health in 2004 to establish a center on minority health that was grounded in community partnership research principles. The Center for the Elimination of Minority Health Disparities was established in 2014 with two themes. First there is a focus on the problems and solutions concerning minorities and other disadvantaged groups in smaller cities and towns (in contrast to NYC, Boston, Baltimore, Compton, etc.). The second theme is the methodological approach—community partnership. The center’s work is about partnering with communities to learn of health problems, matching up community needs and resources with faculty ones, and working together to develop a solution and testing it. The center is now in its 13th year and is a recognized center at the university. We continue to fly the flag of a faculty engaged with the surrounding communities.
On the university campus I have been deeply involved with the FCCER, a group of faculty who seek to support one another in community engaged work and elicit support from the university to continue their work and support the work of others. Between the CEMHD and the FCCER, support for community engaged work extends throughout the campus and it is hoped stimulates more of this work from more of the faculty.