Improving African Americans’ Intentions to Enroll in a Health Registry: Message Development and Evaluation

ABSTRACT

African Americans’ enrollment in health registries is low, negatively affecting their representation in clinical research. Young African Americans are particularly underrepresented. Because medical discoveries are typically based on findings from research that lacks minority representation, new treatments may not be equally effective with members of the African American community. This may further exacerbate health disparities. In this two-phase study, we first collected data from five focus groups to (a) investigate young African Americans’ knowledge about and attitudes toward health registries and (b) explore their perceptions about current messages used to recruit participants into health registries. The findings from the first phase of our research showed that participants had limited awareness and understanding of health registries’ functions and held negative attitudes toward research participation. In Phase 2, we conducted an experiment to compare the effects of a current message, a new message designed based on the findings from our Phase 1 study, and a control. Results showed mixed findings on the impact of the new targeted message. Based on the findings from both phases of this study, we present and discuss future strategies.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Notes

1. The interview guide is available from the first author upon request.

2. The registry WHY is a research project that seeks to understand how different life experiences affect health (URL retracted to allow peer-review). This registry also recruits individuals from the general population and not only from specific patient groups.

Additional information

Funding

This work was supported by a Speed Dating for Researchers-IX Collaborative Funding grant from the College of Communication and Information at the University of Kentucky.