SAMHSA’s Strategic Prevention Framework (SPF) is a five-step planning process to guide the selection, implementation, and evaluation of effective, culturally appropriate, and sustainable prevention activities. The effectiveness of this process begins with a clear understanding of community needs, based on close examination of epidemiological data.
But what happens when these data don’t exist? When standard data collection methods fail to identify the needs of some of the nation’s most vulnerable populations? Or when past negative experiences with data collection prevent members of these populations from participating in current efforts?
Without data, the needs of these specific populations go unmet.
To address this problem, SAMHSA, in Leading Change: A Plan for SAMHSA’s Roles and Actions 2011-2014, named five “hidden” or “hard to reach” groups as priority populations, underscoring the importance of identifying and reaching these individuals with prevention services. They include: lesbian, gay, bisexual, transgender, and questioning (LGBTQ) individuals; veterans and military families; Hispanics and Latinos; American Indians and Alaska Natives; and people with disabilities.
To support this goal, CAPT epidemiologists are working with prevention leaders in states, tribes, and jurisdictions to raise awareness of the importance of assessing the needs of these populations, and to share strategies for gathering data on these groups.
“Reaching members of these groups can be difficult,” explains CAPT Epidemiologist Carol Hagen. “Membership isn’t immediately apparent; members are woven into society. But the more we learn about these populations, the more we can help identify those characteristics and situations that place members at higher risk for substances abuse, as well as those factors that might mitigate those risks.”
Reaching “hidden” or “hard-to-reach” populations is particularly important because membership in one or more of these groups can result in greater risk for a variety of substance misuse and related behavioral health issues. For example, data from the National Survey on Drug Use and Health (NSDUH) show that in 2011, rates of tobacco use were higher among LGBTQ people, American Indian and Alaskan Native communities faced elevated levels of substance use disorders, and Latino youth showed increased rates of suicide attempts compared to the general population.
In addition, 18.5% of returning veterans reported symptoms consistent with post-traumatic stress disorder or depression. Furthermore, while in 2010 the Army’s suicide rate among active-duty soldiers dropped slightly, the number of suicides in the National Guard and Reserve increased by 55%.
Defining “Hidden” and “Hard to Reach”
The terms “hidden” and “hard to reach” have historically been used interchangeably, to refer to traditionally underserved populations. But groups may be assigned these labels for a variety of reasons. Some groups are missed because collecting data from them is difficult. This explains why people who live in rural areas, often without access to telephones, may be excluded from large population surveys.
Other groups may be missed because their data gets “buried” in traditional surveys. “These individuals may be completing the surveys, but because we’re not asking the right questions—questions that would allow us to define group membership—we’re not getting the answers we need,” explains Hagen. “If individuals are not asked, or do not volunteer, information about their personal status, such as their sexual orientation, military service, or tribal affiliation, then it’s difficult to see where or how people connect, or to spot patterns of behavior.”
“Hidden” status may also be self-imposed due to historical distrust, past negative experiences with data collection, or to avoid potential harm or discrimination. Some Native Americans, for example, may be reluctant to participate in surveys because, in the past, data were collected by an outside entity and then not shared with the tribe, or were used in a manner not approved by the tribe. LGBTQ people may be concerned about possible discrimination or potential harm from revealing their sexual orientation. People involved in illegal behavior, such as drug use or gang membership, may also choose to remain hidden for fear of prosecution.
CAPT has developed a series of trainings and webinars designed to help prevention planners, including members of state epidemiological outcomes workgroups (SEOWs), be more effective at including members of “hidden” and “hard to reach” populations in their data collection efforts.
“We need to involve members of these groups right from the start,” explains Iris Smith, Coordinator for CAPT’s Southeast Regional Resource Team. “States need to identify established networks and develop partnerships with trusted leaders. And they need to invite key leaders to join coalitions. In doing so, they are much more likely to develop the data collection strategies and survey questions that reflect the culture and attitudes of the populations they are trying to reach.”
In the webinar Hidden or Hard-to-Reach Populations: Issues, Challenges, and Successes, CAPT also encourages prevention leaders and practitioners to explore the multilayered characteristics that often define groups—such as demographics, culture, and shared attitudes and behaviors—and to consider these factors when developing their data collection approach. Researchers frequently ask questions such as “Where are group members found?” and “How large is the population?” They may also ask questions such as the following:
- Are there established information networks?
- Does the group share a common religion or language?
- What is the group’s history working with researchers? Who do they trust?
- What methods might be most effective for engaging them in the research process?
- What social or organizational processes exist that may create barriers to accessing information?
- How can we improve the way we provide information and communicate?
“We encourage prevention planners to think carefully about the types of survey methods they employ,” explains Smith. “And to understand that a ‘one-size-fits-all’ approach to data collection is unlikely to reveal the critical needs of those populations most often underserved.”
Access Nicola Brackertz’ 2007 research paper “Who is Hard to Reach and Why?” at Swinburne Research Bank to learn more about serving “hidden” or hard-to-reach” populations. Learn more about finding and analyzing epidemiological data.
For more information on related CAPT services, contact Carol Hagen, CAPT Epidemiologist, at firstname.lastname@example.org.