Improving Perceptions of Health Research: Findings From Formative Research about HIV Vaccine Research

Theoretical Background and research questions/hypothesis: The National Institute of Allergy and Infectious Diseases (NIAID) developed the NIAID HIV Vaccine Research Education Initiative (NHVREI) to create an environment in which HIV affected communities are more aware, educated, and supportive of HIV vaccine research. NHVREI conducts outreach to communities that are at high risk for HIV, among them African Americans, Hispanics/Latinos, and gay/bisexual men of all races and ethnicities. To guide its outreach, NHVREI conducted qualitative and quantitative formative research on priority populations’ existing awareness and attitudes about HIV vaccine research. Implications go beyond HIV vaccine research to address messaging about health research in general. The purpose of this research was to inform the development of educational materials for a national initiative to increase public knowledge and support of HIV vaccine research. 

Methods: Research utilized qualitative and quantitative methods, including 34 in-depth interviews, 29 focus groups, and 250 intercept surveys. Interviews included non-governmental and community-based organizations – some recipients of funding from NHVREI – with experience engaging NHVREI priority populations on the topic of HIV vaccine research. Focus group and intercept survey participants included the aforementioned priority populations and also transgender persons (male to female only) of any race/ethnicity. Groups and surveys with Hispanic audiences were conducted in English and Spanish. During interviews, groups, and surveys, participants were asked to provide feedback regarding their perceptions of HIV vaccine research, including facilitators of and barriers to support. Notes from interviews, transcripts from focus groups, and data from intercept surveys were reviewed for recurring themes and similarities and differences across participants. 

Results: Participants acknowledged that they had little knowledge and understanding of clinical research. Distrust of government agencies, researchers, and research institutions conducting the research was voiced; however, distrust of the “government” did not include CDC or NIH, which were perceived as trustworthy. There was a general concern about the use of perceived limited research funds; some expressed concerns that profit motives may take precedence over humanitarian motives, while others were more concerned about diverting funds that could be dedicated to other issues such as HIV treatment or cancer. There was a general lack of understanding of the research process; including methodology (e.g., Who are the participants? How do you know if it is effective?) and safety protocols (e.g., What are the short- and long-term effects of participation? How do you know it is safe?). Concern was also voiced about the “what ifs” related to research (e.g., What if I get sick? What if I become HIV-positive?). Many voiced a lack of information about research successes.

Conclusions: Findings suggest the need to strategically consider ways to increase knowledge of HIV vaccine and other health research. Basic health research information is needed to reduce misinformation and increase knowledge. Messages should include ongoing updates, including the potential for success. Issues of distrust of researchers and research organizations and safety concerns should be met with targeted communication and environmental changes related to health care delivery and research processes.

Implications for research and/or practice: The lack of basic health research knowledge suggests a need for messaging across health topic areas to grow support for health research.