Circles Within Circles

Center for Indigenous Health

Bloomberg School of Public Health, Johns Hopkins University

Embedding Culture in Healing and Recovery

This presentation focuses on the completion of a study:

Clinical Trials Network Great Plains Initiative

Perspectives on Substance Use Disorder: A Participatory Approach to Prevention and Treatment in Tribal Communities

Funded by the National Institutes on Drug Abuse (NIDA) one of the National Institutes of Health (NIH) #5UG1DA013732-24

The award was granted to the Ohio Valley Node of the NIDA Clinical Trials Network (CTN). The study team was a diverse team of professionals in backgrounds ranging from community health, to clinical medicine, addiction recovery, and traditional medicine. Identities of researchers include Lakota, of European heritage, South Asian, Alaska Native, Two Spirit, faculty, research staff, and doctoral students.

This study produced a Tribally-driven research agenda from seven Great Plains behavioral health programs, including Tribes, not-for-profit programs, and Indian Health Service health centers.

The study used a Community Based Participatory Research (CBPR) approach to understand areas requiring further research; and a data dissemination process that generated practical actions and ideas towards improving outcomes in participating communities.

Today we reflect on feedback from data dissemination for the promotion of Tribal data sovereignty, and learnings from participant responses to the data.

This is also a reflection on visiting with Tribal behavioral health leaders and the value of taking time to review data products together, and co-creating plans for utilizing these data to build their own pragmatic work in the community.

DATA DISSEMINATION

Outcomes of this CBPR dissemination process included both actions and ideas...

Actions include: 1) the creation and use of a form to document responses to data dissemination.

2) Identifying a community need for more technical assistance to support Tribal health professionals' skills and capacity building

Ideas that emerged from this process include: 1) qualitative research to document lived experiences from healing and recovery through Ceremony.

2) Possibility of Community Health Workers or Community Health Representatives for detox and recovery centers and home visiting.

3) Researching models and funding for supportive housing on and off Reservation Trust Land.

This process reflects Tribal Data Sovereignty by generating data sourced from Tribal communities and returning it in a way that is useful, respectful, and generative of further collaboration and support from the research entity.

The goal is to ensure that research impacts are long-term, sourced and supported by community, and endorsed by Tribal health leaders.

BEHAVIORAL HEALTH DIRECTORS ON DATA SOVEREIGNTY

Data Sovereignty Definition

US Indigenous Data Sovereignty Network: Indigenous Data Sovereignty (IDSov) reaffirms Indigenous Peoples’ rights to govern the collection, ownership, and application of their data. IDSov derives from tribes’ inherent right to govern their peoples, lands, and resources. This conception of data sovereignty positions Indigenous Peoples’ activities to govern data within Indigenous rights and human rights frameworks.

Bringing home the data

This research was guided by principles of the Medicine Wheel, the Circle holding all other Circles.

Study design also took a circular form, starting with an area of opportunity in the community, completing with delivery of those answers to co-establish solutions.

The data also mirrored a Medicine Wheel in the nature of responses: with solutions and priorities for recovery generated by and returned to each community.

Data visualizations were made in four directions: emotional (relational), spiritual (ceremonial), mental (medication or treatment-related), and physical (behavior change).

In addition to actionable findings, a 10 point research agenda was determined from results to study what is of importance to the community.

This research serves as an Indigenous-led response to the crisis of addiction that has impacted entire communities, families, and individuals in the Great Plains.