Background: During the current National Health and Nutrition Examination Survey (NHANES), interviewers have noted difficulties recruiting middle-to upper-class African Americans; many have cited the Tuskegee syphilis study as a major reason for mistrusting government research. In response, the National Center for Health Statistics (NCHS) staff set out to develop a brochure to help interviewers address concerns raised by the Tuskegee study. Methods: We asked university researchers and government officials if they were aware of existing documents that addressed minority concerns raised by the Tuskegee study. No such documents were identified, but those familiar with the damage done by the Tuskegee study unanimously recommended that our brochure acknowledge up front the unpleasant realities of this history. Draft brochures acknowledge the misconduct and encourage participation in the health survey. The NCHS Questionnaire Design Research Laboratory planned evaluations to determine the most effective brochure. The laboratory recruited minorities who distrust government research to provide feedback. Results: Three brochures have been developed; the evaluation has been approved by the NCHS Institutional Review Board and will be conducted during February. We will present a summary of the evaluation outcome. A final version of the brochure will be developed and distributed by the NHANES interviewers. Conclusion: While a simple document, such as a brochure, may not effect change in a strongly held attitude or belief, it is clearly possible to develop a tool which may serve to acknowledge concerns and open a dialogue with individuals who might otherwise decline participation in a national government sponsored survey.
Learning Objectives: Describe the Tuskegee syphilis experiment as it relates to recruitment for health studies. Describe the material development and formative evaluation processes one health study conducted to help with recruitment efforts
Keywords: Evaluation, Survey
Presenting author's disclosure statement:
Organization/institution whose products or services will be discussed: None
I do not have any significant financial interest/arrangement or affiliation with any organization/institution whose products or services are being discussed in this session.