Embracing Respect for Indigenous Populations as the Basis for Community Based Participatory Research: Lessons learned from the Community Engagement Process with the members of the Maryland Piscataway Conoy Tribe

Context: The Piscataway Indians face many of the obstacles to participation in American life that is encountered by other American Indians. Some of the challenges include a lack of access to health care, however, foremost amongst their challenges is the lack of recognition and lack of support by government agencies. This has led to a reluctance to participate in research studies and to participate in clinical trials.

Purpose: This report examines the challenges the Piscataway Indians face in obtaining access to services and highlights the processes that were used to foster joint decision-making between the tribe and outsiders in engaging in cancer-related research.

Methods: A snowball sample approach was used to collect data from members of the Maryland Piscataway Conoy TRIBE. Data from this study was compared to published data (the Behavioral Risk Factor Surveillance System and the 1994 Commonwealth Fund Minority Health Study) to see how the respondents from the Maryland Piscataway Conoy TRIBE fared in relation to other Maryland residents and other Americans.

Findings: Between 2000 and 2008, the Piscataway tribal council met monthly with members of the University of Maryland, Baltimore to create a venue that would allow for joint decision-making to occur between the Tribe and outsiders interested in collaborating with the tribe. This has led to a tribal peer review screening process that assesses the relevance of proposed research activities to the tribe. This same mechanism is used as a means to support the capacity building process for the tribe. This process has resulted in the tribe launching three cancer related studies between 2000 and 2008 and leveraging more than $600,000 in external funds to support their education and research efforts.

Implications: Using Community-based Participatory Research (CBPR) has created a window of opportunity that the Piscataway can use to rectify previous injustices while increasing their access to cancer treatment/prevention services. More work is needed, though, to move them toward sustainability and to close the disparities in access to care.