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Developing an approach for local formative research in preparation for research among hard-to-reach populations: Experiences from the U.S. National HIV Behavioral Surveillance System, 2003-2011

Kathy M Hageman, Centers for Disease Control and Prevention 
Elizabeth DiNenno, CDC 
Isa Miles, Centers for Disease Control and Prevention  
*Alicia Edwards, Centers for Disease Control and Prevention (CDC) 

Keywords: HIV, behavioral surveillance, formative research

Since 2003, the Centers for Disease Control and Prevention have conducted the National HIV Behavioral Surveillance (NHBS) System annually in a minimum of 20 metropolitan statistical areas (MSA) with the highest rates of HIV/AIDS. NHBS monitors the HIV prevalence and behaviors of three at-risk populations: men who have sex with men (MSM), injecting drug users (IDU), and heterosexuals at increased risk for HIV (HET). Each year, one at-risk population is investigated, with approximately 500 participants recruited per MSA. Sampling methodologies differ by population: venue-based date-time sampling for MSM and respondent-driven sampling for IDU and HET.

There are unique challenges to accessing each of these hard-to-reach populations. To address these barriers, NHBS project staff complete approximately three months of formative research each year. These efforts ensure successful recruitment, tailoring of NHBS implementation to local settings, and community support.

Formative research procedures are standardized across sites and involve a two-step approach. First, a review of secondary data seeks to answer key demographic and behavioral questions about the at-risk population and identify knowledge gaps. Sources include research studies, health department data and publications, print and on-line media, and community resources. Second, primary formative research seeks to answer knowledge gaps as well as identify barriers and solutions to recruitment, participation, and logistical challenges to ensure successful local implementation. This is achieved through interviews with community stakeholders, gatekeepers, and members of the at-risk population as well as community observations.

NHBS operates in the context of three diverse study populations with varying sampling methodologies in a dynamically changing HIV epidemic. The development of a systematic and standardized approach to formative research, with annual review for improvements and the flexibility to adapt to emerging needs, has proven invaluable to ensuring successful recruitment of hard-to-reach populations at risk for HIV.