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The 130th Annual Meeting of APHA |
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The 130th Annual Meeting of APHA |
Natalie A. Brown, BA1, Tina Harralson1, Diana Harris, MA1, and Etienne J Phipps, PhD2. (1) Einstein Center for Urban Health Policy and Research, Albert Einstein Healthcare Network, One Penn Boulevard, Wister Tower, 4th Fl. Suite 4442, Philadelphia, PA 19144, 215-848-1264, brownna@einstein.edu, (2) Einstein Center for Urban Health Policy and Research, Thomas Jefferson University, Albert Einstein Healthcare Network-Germantown Community Health Services, 1 Penn Blvd, Philadelphia, PA 19144
It is well known that distrust about the healthcare system is higher among minority populations and is related to the low enrollment of minorities in research studies, including clinical trials. The use of large research databases as sources for future patients is an important resource for a more equitable recruitment effort that does not target specific patients or omit others. However, research databases present some unique issues in research. Specifically, they require individuals to divulge personal health information in the absence of a specific study and into a resource that can be accessed by an unknown number of others.
We present results from a multi-site NIH-funded study investigating whether there are ethnic differences in terms of willlingness to “sign up” as a research subject in the future to participate in rehabilitation research. Interviews were conducted with two hundred and seventy one patients (28% African American, 72% White) who were diagnosed with either a traumatic brain injury (30%) or cerebrovascular accident (stroke; 70%) or with their surrogate. Differences between consenting and refusing participants will be presented. Specific areas addressed include differences in SES, medical history and clinical presentation, satisfaction with medical care, belief in the efficacy of medical science, and social support. Results from focus groups with sub-groups of these patients will also be used to highlight findings. Implications for addressing disparities in research efforts will be discussed.
Learning Objectives:
Keywords: Research Ethics, Participatory Research
Presenting author's disclosure statement:
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.