Like all Strategic Prevention Framework State Incentive grantees, tribes receiving federal funds for prevention work are required to collect data about the nature, scope, and severity of their community’s substance abuse and related behavioral health problems. These data are key to ensuring that tribes address the most pressing needs of their communities. But many tribes face obstacles to both collecting relevant data and ensuring that these data, once collected, will not be misused or misinterpreted. SAMHSA’s Center for the Application of Prevention Technologies (CAPT) has been instrumental in helping tribes collect the data needed to guide their prevention efforts and in establishing safeguards for protecting these data from misuse.
According to CAPT Chief Epidemiologist Craig Love, tribes are in “very different places as far as their capacities for collecting data are concerned.” The CAPT’s initial work, then, was to understand how the center could best provide tribes with the information and skills they needed. For some tribes, this meant trainings on the basics of epidemiology, to prepare them for their own data gathering efforts, and/or to work more effectively with outside consultants. For others, the CAPT provided technical assistance on topics ranging from convening an epidemiological work group to using data to prioritize needs.
Many tribes struggle with how and where to obtain data specific to their tribe. States often rely on national surveys, such as the Youth Risk Behavior Surveillance System, for data on alcohol use and related behavioral health problems. But these surveys don’t always contain information on tribal communities. When they do, the data are not always disaggregated in ways that are helpful.
To address this challenge, the CAPT has worked with tribes to identify alternative data sources, drawing on the information-collecting strengths many tribes already possess. For example, tribal gatherings such as talking circles – similar to focus groups – can be important tools for gathering information to inform prevention work. Kristen Clements-Nolle, epidemiologist for the CAPT, explains, “As tribes look at alternative sources of data, they realize they often have more information than they thought.”
One way to help tribes who face data collection hurdles is to broaden the definition of what constitutes data. The CAPT facilitated a dialogue between tribes and SAMHSA that has enabled a more flexible definition of data to emerge, one in which qualitative data can be used alongside quantitative data. “Being flexible about the use of qualitative data helps tribes move beyond thinking that they have to immediately produce quantitative data or they can’t move forward,” says Dr. Clements-Nolle.
Tribes and SAMHSA also have been working diligently to build cooperation and increase trust. Historically, tribal experiences related to data collection and usage have not been uniformly positive. At times, outside organizations used data related to tribal substance abuse to tarnish the image of tribes. Researchers have gathered data on tribes under false pretenses, published data without the tribes’ permission, or collected data but neglected to return the resulting information to the tribes for their use. Dr. Love explains, “There’s a long historical basis for mistrust. Tribes have been identified as having major problems and all these negative things. What tribes want is to be treated with respect.”
Because of these experiences, tribes have been looking for ways to take more ownership of the data collection process and how their data will be used. The CAPT has assisted tribes in drawing up guidelines for reviewing data survey proposals to ensure that the data collected and shared will remain confidential, and be used to inform programs that support the health of tribal members. To this end, several tribal entities have formed their own Institutional Review Boards to ensure ethical treatment of tribes and their data. According to Love, “This is their data. We want to honor their ownership of it.”
The CAPT’s tribal work has been a learning experience for everyone involved. “We’ve come a long way, but we still have a ways to go,” explains Love. “We look forward to building on the foundation we’ve established, so that tribes have the tools they need to move their prevention efforts forward.”