The Symbolic Value and Limitations of Racial Concordance in Minority Research Engagement.

The well-documented underrepresentation of racial and ethnic minorities in research demands action. The field of health disparities research, however, lacks scientific consensus about how best to respectfully recruit underrepresented minority populations in research. We explore the investigators' perspective regarding how their own racial and ethnic background influenced their ability to recruit minorities, including (a) the influence of racial concordance ("race-matching") in research recruitment, (b) attributes and shared values important in the development of trust with minority communities, and (c) the role self-reflection plays in the development of meaningful research relationships. In 2010, we conducted in-depth, semi-structured, telephone interviews with investigators (N= 31) experienced with minority populations. Through the analysis of this coherent narrative, we uncovered both the symbolic and surface-level assumptions regarding minority recruitment to expose a deep structural understanding of race, ethnicity, and social context that is critical for bridging the true social difference between researchers and participants.

Use of a Qualitative Story Deck to Create Scenarios and Uncover Factors Associated with African American Participation in Genomics Research.

To gain a complex understanding of willingness to participate in genomics research among African Americans, we developed a technique specifically suited to studying decision making in a relaxed social setting. The "Qualitative Story Deck," (QSD) is a gamified, structured elicitation technique that allows for the spontaneous creation of scenarios with variable attributes. We used the QSD to create research scenarios that varied on four details (race/ethnicity of the researcher; research goal; biospecimen requested; and institutional affiliation). Participants created scenarios by randomly choosing cards from these categories and provided: (1) a judgement about their willingness to participate in the research project represented; and (2) their thought process in reaching a decision. The QSD has applicability to topics involving decision making or in cases where it would be beneficial to provide vignettes with alternate attributes. Additional benefits include: rapid establishment of rapport and engagement and the facilitation of discussion of little known or sensitive topics.

Identifying Substantial Racial and Ethnic Disparities in Health Outcomes and Care in Wisconsin Using Electronic Health Record Data.

BACKGROUND: Our goal was to identify racial and ethnic disparities in health outcome and care measures in Wisconsin. METHODS: We used electronic health record data from 25 health systems submitting to the Wisconsin Collaborative for Healthcare Quality to identify disparities in measures, including vaccinations, screenings, risk factors for chronic disease, and chronic disease management. RESULTS: American Indian/Alaska Native and Black populations experienced substantial disparities across multiple measures. Asian/Pacific Islander, Hispanic/Latino, and White populations experienced substantial disparities for 2 measures each. DISCUSSION: Reducing health disparities is a statewide imperative. Root causes of health disparities, such as systemic racism and socioeconomic factors, should be addressed for groups experiencing multiple disparities, with focused efforts on selected measures when indicated.

Training needs of investigators and research team members to improve inclusivity in clinical and translational research participation.

Despite increasing attention to the importance of diverse research participants, success across the translational research spectrum remains limited. To assess investigator and research team training needs, we conducted a web-based survey exploring barriers in knowledge and practice. Respondents (n = 279) included those affiliated with the University of Wisconsin Institute for Clinical and Translational Research (ICTR). Although all respondents reported an abstract belief in the importance of diversity, factors associated with higher levels of best practices knowledge and implementation included: (1) use of federal funding; (2) having fewer years of experience; (3) recruiting healthy participants; and (4) having recruitment training.

Knowledge, attitudes, and beliefs about dilated eye examinations among African-Americans.

PURPOSE: To understand factors that influence African-Americans' attitude toward eye examinations. METHODS: Ten focus groups were conducted with 86 African-Americans. Four focus groups were conducted with people 65 years of age and older who had not received a dilated fundus examination (DFE) in the past 2 years, two groups were held with people 65 years of age and older who had had a recent DFE, and two groups each were held with people 40 to 64 years of age, with and without recent DFEs. Focus group interviews were conducted by using a moderator guide to address perceived benefits of and barriers to getting an eye examination; motivators for getting DFEs; and knowledge of eye examinations, glaucoma, and diabetic retinopathy. Participants also completed a questionnaire that provided demographic information. Quantitative and qualitative analyses were conducted. RESULTS: Cost or lack of sufficient insurance was identified as the most important barrier to getting a DFE. Also frequently mentioned was not having any symptoms and being too busy. The most frequently cited benefit of getting a DFE was to help prevent eye disease, whereas the most frequently reported motivating factor was experiencing a vision problem. Regarding knowledge, many people did not know the risk factors for glaucoma, but seemed to have a better understanding of how to reduce the effects of diabetes on their eyes. CONCLUSIONS: Study findings identified important links between financial resources and experiencing a vision problem and the adoption of preventive eye care in an urban African-American population.

Building a "Deep Fund of Good Will": Reframing Research Engagement.

BACKGROUND: The engagement of underrepresented populations in health research has been an ongoing challenge. Yet, the participation of these groups is recognized as key to health equity. METHODS: Semi-structured interviews with 31 experienced investigators successful in the recruitment of underrepresented minorities were analyzed with reference to the concept of social capital to determine: 1) if it is actually in use by successful researchers although yet unidentified as such; and 2) if the rubric could shed light on new directions especially for those who find it difficult to implement community-engaged recruitment methods systematically. RESULTS: Findings indicate that some elements of the concept of social capital are being used successfully, but that there are also substantial barriers to its full implementation. CONCLUSION: A lack of enforceable trust and associated institutional support for researchers is a detriment to research engagement. Efforts to remedy this would benefit large research projects, including clinical trials.

African Americans with a family history of colorectal cancer: barriers and facilitators to screening.

PURPOSE/OBJECTIVES: To explore barriers and facilitators of screening for colorectal cancer (CRC), as well as suggestions for improving screening among African Americans with first-degree relatives with CRC. RESEARCH APPROACH: A qualitative, descriptive approach involving focus groups. SETTING: A community healthcare clinic in Baltimore, MD. PARTICIPANTS: 14 African American men and women aged 40 or older with at least one first-degree family member affected by CRC. METHODOLOGIC APPROACH: In-depth focus groups were conducted until thematic saturation was achieved. Thematic analysis and data reduction were conducted using ATLAS.ti, version 5.0. MAIN RESEARCH VARIABLES: CRC screening barriers and facilitators. FINDINGS: The participants were mostly male, insured, and had a parent with CRC. Commonly reported barriers to CRC screening included fear of serious illness, mistrust of the medical establishment, potential screening discomfort, lack of information on CRC risk factors, lack of healthcare access, absence of symptoms, no knowledge of CRC screening benefits, community reticence about cancer, and CRC myths. Facilitating factors for CRC screening included a belief of personal risk for CRC, physician recommendations, and acknowledgment of age as a risk factor. Suggestions to increase screening rates included distribution of culturally appropriate and community-based efforts (e.g., mobile units, church-based interventions). Participants also suggested ways to increase motivation and provide social support for screening patients. CONCLUSIONS: Additional research is needed to identify and test effective screening approaches for this underserved group at increased risk for CRC. Study results suggest that cancer risk and screening education, coupled with screening opportunities in the community, may yield increased screening rates. INTERPRETATION: Lack of knowledge about CRC and CRC screening exists in the study population. Promoting screening across generations, developing and disseminating culturally appropriate educational materials within the community, and encouraging older individuals to screen to take care of their family may be appropriate interventions.