Reviewing the CDC's HIV/AIDS Program

Several months ago I received this invitation:

The Centers for Disease Control and Prevention (CDC), Division of HIV/AIDS Prevention (DHAP), invites you to participate in a comprehensive External Peer Review of its HIV/AIDS program…Data recently published by CDC indicate that the number of new HIV infections occurring annually in the United States is 40% higher than previously estimated, that new infections have been steadily increasing among men who have sex with men (MSM) since the early 1990s, and that the epidemic continues to have a disproportionately severe impact on African Americans and Hispanics/Latinos. These data have led DHAP to initiate this comprehensive review of its surveillance, research, program, and evaluation portfolios to help determine whether they are appropriately configured to address the current epidemic…

The purpose of the review is three-fold: 1) to provide DHAP with objective input and guidance on its scientific and programmatic priorities and direction, 2) to serve as a basis for CDC’s HIV Prevention Strategic Plan, and 3) to provide a platform for the development of a National HIV Prevention Plan that incorporates stakeholder perspectives and needs.

Not being a researcher in the HIV arena, nor a CDC grantee or member of a stakeholder group, I was curious as to what prompted their invitation (I later learned that having ‘a social marketing perspective’ was an important element in their participant mix). Still, after a week of talking with some colleagues and mulling it over, I agreed to be one of about 50 or so external experts to review their activities over a 3-day period organized under five panels of Planning, Prioritizing, and Monitoring; Surveillance; Biomedical Interventions, Diagnostics, Laboratory, and Health Services Research; Behavioral, Social, and Structural Interventions Research; and Prevention Programs, Capacity Building, and Program Evaluation. It proved to be a daunting task, especially since the last full programmatic review was in 1993.

Each panel was asked to review DHAP’s HIV research and prevention programs in light of their:

• relevance to DHAP’s mission
• scope and prioritization;
• scientific and technical quality, approach, and direction;
• adequacy of translation and dissemination of research findings for use in programs;
• strengths, gaps, challenges, and opportunities; and
• extent to which the National Center for HIV, Viral Hepatitis, STD, and TB Prevention (NCHHSTP) programmatic imperatives of program collaboration and service integration, reducing health disparities, and maximizing global synergies are addressed.

I was asked to sit on the panel that focused on the Behavioral Research portfolio. The report of our collective deliberations and recommendations is anticipated to be available in the Fall of 2009; in the meantime, here are some of the major themes that emerged during our panel’s work.

First, some context. The total DHAP budget in FY2009 was $853 million, of which $28 million (that’s 3.2%!) was for behavioral intervention research. What impressed me (and others on the panel) was how this limited budget was spent on mimicking a drug R&D process of uncovering the most effective elements of HIV prevention programs, testing them, packaging them and then promoting their availability to the community. There was limited attention to what one panel member referred to as ‘the science of the street’ or learning from what is working in communities. Indeed, these activities were labeled ‘homegrown’ solutions and had little weight or prominence in the Diffusion of Effective Behavioral Interventions (DEBI) model.

The panel concurred that focusing such a small budget on the full spectrum of R&D activities was not practical or effective. Rather, we suggested more of the CDC behavioral research endeavor should focus on the improving the science at the ends of the spectrum – innovation (often gleaned from communities) and dissemination (how to achieve scale for effective programs). We threw around phrases such as ‘community-driven research’ and ‘community-to-science’ to reinforce our point. We asked: How about establishing an Innovations Lab for behavioral change research for HIV prevention to respond to emerging needs through formative research and Phase 1 studies and leave Phase 2 and 3 work to other agencies (NIH, HRSA, SAMHSA) to fund? Why not have a Systems Lab to improve our ability to influence/study diffusion and employ social marketing to scale-up proven interventions through health departments and CBOs rather than rely on the discredited idea of passively ‘diffusing’ or promoting them (for example)? Looking at the CDC as an institution, we were also asking ourselves quite often: What are the rewards and incentives for staff who conduct innovative behavioral research and dissemination of practices? Are they similar to the epidemiological and clinical research that is being done? And if not, why not?

At the conclusion of the 3 days, our top-line recommendations included:

• CDC should engage in behavioral and social research - primarily formative and operations/effectiveness.
• Research should target practices, social factors and behaviors that fuel HIV epidemics across populations and settings.
• Work with Community-Based Organizations (CBOs) and Health Departments (HDs) to determine how best to focus and tailor these responses in their particular communities.
• Linkage and exchange of global behavioral, social and operations research findings.
• Research should focus on the process of dissemination that emphasizes studies of training procedures, end-user response to guidance, implementation strategies, contract manager effectiveness, enhancers and barriers to scale up, evidence in the real world for effectiveness, and capacity building.
• Use social marketing as a strategy for capacity building and dissemination.
• CDC should undertake a community-driven research agenda that takes advantage of its unique relationships with CBOs and HDs and encourages their input in the identification of emerging issues and potentially effective practice-based interventions.
• CDC should work with HDs and CBOs in operational research to ensure that evidence-based and data-supported linkage to care strategies are used in conjunction with HIV testing.  The goal is to make sure that persons newly diagnosed with HIV and persons not connected to care are linked and retained in care.

More detailed recommendations for communication and social marketing research that I drafted for our panel were:

• Communication research needs to expand focus from individual-level behaviors to more social and structural outcomes (e.g., stigma, discrimination, organizational practices).
• Social marketing has a central role to play in scaling up interventions and in research-to-practice strategies.
• Audiences need to be broadened from at-risk populations and service providers to include DOH and CBO implementation agents (for example, Learning from the Community: What Community-Based Organizations Say About Factors that Affect HIV Prevention Programs -pdf).
• Theoretical models that drive program development, implementation and evaluation do not reflect a unified conceptualization of behavior change.

After a number of posts about the need for more radical behavioral research in HIV prevention and to scale up demonstrably effective programs for HIV prevention, it was an honor and privilege to serve on the DHAP review team and to part of a very knowledgeable, dedicated and fun panel. While I cannot predict what the final report might look like, or how CDC may choose to implement the recommendations of our panel and from the other four, hopefully you will find a new idea or inspiration in these recommendations to improve your ability to design public health change.