The limits of collaboration: a qualitative study of community ethical review of environmental health research.

OBJECTIVES: We assessed the effectiveness of various systems of community participation in ethical review of environmental health research. METHODS: We used situation analysis methods and a global workspace theoretical framework to conduct comparative case studies of 3 research organizations at 1 medical center. RESULTS: We found a general institutional commitment to community review as well as personal commitment from some participants in the process. However, difficulty in communicating across divides of knowledge and privilege created serious gaps in implementation, leaving research vulnerable to validity threats (such as misinterpretation of findings) and communities vulnerable to harm. The methods used in each collaboration solved some, but not all, of the problems that hindered communication. CONCLUSIONS: Researchers, community spokespersons, and institutional review boards constitute organizational groups with strong internal ties and highly developed cultures. Few cross-linkages and little knowledge of each other cause significant distortion of information and other forms of miscommunication between groups. Our data suggest that organizations designed to protect human volunteers are in the best position to take the lead in implementing community review.

Impact of patient race on patient experiences of access and communication in HIV care.

BACKGROUND: Patient-centered care--including the domains of access and communication--is an important determinant of positive clinical outcomes. OBJECTIVE: To explore associations between race and HIV-infected patients' experiences of access and communication. DESIGN: This was a cross-sectional survey. PARTICIPANTS: Nine hundred and fifteen HIV-infected adults receiving care at 14 U.S. HIV clinics. MEASUREMENTS: Dependent variables included patients' reports of travel time to their HIV care site and waiting time to see their HIV provider (access) and ratings of their HIV providers on always listening, explaining, showing respect, and spending enough time with them (communication). We used multivariate logistic regression to estimate associations between patient race and dependent variables, and random effects models to estimate site-level contributions. RESULTS: Patients traveled a median 30 minutes (range 1-180) and waited a median 20 minutes (range 0-210) to see their provider. On average, blacks and Hispanics reported longer travel and wait times compared with whites. Adjusting for HIV care site attenuated this association. HIV care sites that provide services to a greater proportion of blacks and Hispanics may be more difficult to access for all patients. The majority of patients rated provider communication favorably. Compared to whites, blacks reported more positive experiences with provider communication. CONCLUSIONS: We observed racial disparities in patients' experience of access to care but not in patient-provider communication. Disparities were explained by poor access at minority-serving clinics. Efforts to make care more patient-centered for minority HIV-infected patients should focus more on improving access to HIV care in minority communities than on improving cross-cultural patient-provider interactions.

Sexually transmitted infections in rural Madagascar at an early stage of the HIV epidemic: a 6-month community-based follow-up study.

BACKGROUND AND OBJECTIVES: Sexually transmitted infections (STIs) in Madagascar have primarily been monitored in selected groups of patients attending STI clinics in major cities as part of the HIV surveillance program in Madagascar. GOAL OF THE STUDY: The aim of the study was to provide complementary data related to STI prevalence in a general rural population. STUDY DESIGN: STIs were investigated in 643 subjects aged 15 to 49 years as part of a cross-sectional morbidity study of urogenital schistosomiasis. Infection rates were reassessed 3 weeks and 6 months after systematic STI treatment at baseline. RESULTS: Neisseria gonorrhoeae (Ng), Chlamydia trachomatis (Ct), Mycoplasma genitalium (Mg), Trichomonas vaginalis (Tv), and/or antibodies to Treponema pallidum (Tp) were diagnosed in 125 (37.5%) of 333 women and in 83 (26.8%) of 310 men. In addition, 49% of the women and 28% of the men were infected with herpes simplex virus-2. Six (0.9%) subjects were found HIV-antibody positive. Between the 3-week and 6-month follow-up surveys Ng, Ct, and/or Mg prevalence increased most prominently in women aged 15 to 24 years. CONCLUSION: Study findings suggest that rural areas in Madagascar should be as closely monitored and assisted in STI and HIV control as their urban counterparts. Following the current consensus, young adults should constitute a priority target group in the control programs.