Recruitment Of Minority Populations Research Articles

Abstract PO-085: A mixed-methods study of minority recruitment for cancer genomics research at a large urban safety net hospital

Abstract Background: Racial and ethnic minorities are underrepresented in cancer genomics research, and advancements in personalized medicine without inclusion of minority groups is likely to further exacerbate disparities in care and treatment outcomes. Prior research has demonstrated successful recruitment of minority populations for biospecimen donation through community-based approaches, physician engagement, culturally appropriate education, and on-site services. However, there is a significant gap in the literature regarding practical, low-cost interventions to maximize enrollment in biospecimen research studies at hospitals serving a diverse patient population. Objective: This study surveys eligible participants for cancer biospecimen research and aims to intervene on barriers to enrollment. Methods: Between January 2021 and June 2021, participants eligible for four different genomics studies were surveyed regarding reasons for consenting to biospecimen donation as well as barriers to participating among those who declined. The survey consists of six multi-part questions for a total of thirteen questions and requires an average of five minutes to complete. Results: Preliminary results include survey responses from 30 participants. Fourteen participants self-identified as Black or African American, twelve as White, two as Asian, and two as other. One participant self-identified as Hispanic. The majority of participants (73%) consented to biobank specimen collection including 50% of Black participants, 92% of White participants, and 100% of Asian and other participants. Of the eight participants who did not consent to donation, seven were Black. Among nine participants who reported that the study was recommended by their provider, all but one consented to donation. The majority of participants who consented to biospecimen collection reported contributing important information to medical science (73%) and potentially helping others with similar conditions in the future (68%) as reasons for donation. One participant who declined biospecimen donation reported that he would have felt less anxious if clinical staff had been present to explain the study. Two participants recommended including family members and other caregivers in the consent process, especially for older adults. One participant indicated difficulty reading through the consent form while another reported desire for more information “on the type of research” that would be conducted on the biospecimens. Conclusion: Our findings suggest that a majority of patients will consent to biospecimen collection, however Black patients are more likely to decline, and provider engagement is helpful. We found that our consent process can be improved with greater physician engagement, inclusion of family members and caregivers, and concise, patient-oriented presentation of information. Future work will involve implementation of interventions based on these findings. Citation Format: Tina Zhang, Nina Modanlo, David Li, Kiana Mahdaviani, Naomi Ko. A mixed-methods study of minority recruitment for cancer genomics research at a large urban safety net hospital [abstract]. In: Proceedings of the AACR Virtual Conference: 14th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2021 Oct 6-8. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2022;31(1 Suppl):Abstract nr PO-085.

African American Cancer Survivors' Perspectives on Cancer Clinical Trial Participation in a Safety-Net Hospital: Considering the Role of the Social Determinants of Health.

Although there has been an increase focus on recruitment of minority populations at safety-net hospitals into cancer clinical trials, there is still a paucity of research exploring minority participation in cancer clinical trials at safety-net settings. The study utilized a multi-level, qualitative approach to assess the clinical and non-clinical facilitators and barriers to African American participation in cancer clinical trials at a safety-net hospital. From June 2018 to July 2019, cancer survivors (n = 25) were recruited from a cancer center at a safety-net hospital in the southeastern USA and participated in a 60-min focus group. Data was coded and analyzed to identify the most prominent themes. Most participants were female (78%), with a mean age of 56 years. The majority were diagnosed with breast cancer (68%) and disabled or unemployed (55%). Major themes identified were (1) lack of understanding of cancer clinical trials, (2) perceptions and fears of cancer clinical trials, and (3) preferred role and characteristics of patient navigator. The barriers and facilitators to enrollment in cancer clinical trials were more pronounced in the safety-net setting, given the overdue burden of social determinants of health. Study findings yield important insights and essential practices for recruiting and engaging underrepresented Black cancer patients into cancer clinical trials, specifically for safety-net settings. Including patient navigators may help traverse potential barriers to cancer clinical trial participation and will allow for the attention to social determinants of health, and ultimately increase the number of African Americans participating in cancer clinical trials.

Recruitment of Immigrant Hispanic Mothers in Research: An Application of the EERC Guidelines.

Introduction: Innovative and culturally sensitive strategies are needed to promote research participation among minorities and develop targeted interventions aimed at decreasing health disparities. The purpose of this article is to illustrate application of the EERC (evaluate, engage, reflect, and carefully match) guidelines in facilitating participant recruitment in a study exploring infant feeding practices of Hispanic mothers. Methodology: Retrospective application of the EERC guidelines assessed using data extracted from the researcher-study recruitment field notes. A systematic categorical process was used to determine if each of the guidelines' key concepts were incorporated in the recruitment process. Results: Successful recruitment of 62 immigrant Hispanic mothers (approximately 82% of target goal) was accomplished through implementation of most of EERC criteria (90%) in planning and recruitment phases of the study. Discussion: Application of EERC guidelines facilitates recruitment of minority populations. Enhanced participant recruitment assists in assessment of population-unique conditions and targeted interventions leading to disease prevention and improved outcomes.

Training Needs of Clinical and Research Professionals to Optimize Minority Recruitment and Retention in Cancer Clinical Trials.

The study of disparities in minority recruitment to cancer clinical trials has focused primarily on inquiries among minority patient populations. However, clinical trial recruitment is complex and requires a broader appreciation of the multiple factors that influence minority participation. One area that has received little attention is minority recruitment training for professionals who assume various roles in the clinical trial recruitment process. Therefore, we assessed the perspectives of cancer center clinical and research personnel on their training and education needs toward minority recruitment for cancer clinical trials. Ninety-one qualitative interviews were conducted at five U.S. cancer centers among four stakeholder groups: cancer center leaders, principal investigators, referring clinicians, and research staff. Interviews were recorded and transcribed. Qualitative analyses focused on response data related to training for minority recruitment for cancer clinical trials. Four prominent themes were identified: (1) Research personnel are not currently being trained to focus on recruitment and retention of minority populations; (2) Training for minority recruitment and retention provides for a specific focus on factors influencing minority research participation; (3) Training on cultural awareness may help to bridge cultural gaps between potential minority participants and research professionals; (4) Views differ regarding the importance of research personnel training designed to focus on recruitment of minority populations. There is a lack of systematic training for minority recruitment. Many stakeholders acknowledged the benefits of minority recruitment training and welcomed training that focuses on increasing cultural awareness to increase the participation of minorities in cancer clinical trials.

Abstract A33: The utility of a state-wide cancer registry in recruiting a clinically representative population-based sample of young black women diagnosed with early-onset breast cancer.

Abstract Background: Black women have a higher incidence of and mortality from early-onset breast cancer than White women. This may partly be attributed to mutations in the breast cancer susceptibility genes, BRCA1 and BRCA2 (BRCA), as well as a greater proportion of the aggressive triple negative breast cancer subtype (TN). Recruitment of Black women with early onset breast cancer into etiologic studies is an important step toward identifying factors contributing to this health disparity and developing appropriate risk reduction and treatment strategies to reduce mortality in this underserved population. Objective: Within a registry-based sample of Black women diagnosed with breast cancer ≤ 50 years between 2009-2011, the purpose of this analysis was to examine differences in clinical characteristics between those 1) in whom contact was versus was not established and 2) among those contacted, those who indicated interest versus declined participation to a study investigating the etiology of breast cancer. Methods: The state-wide cancer registry, Florida Cancer Data System (FCDS) provided contact information and clinical characteristics (i.e. age at diagnosis, stage, grade, histology, TN status, nodes positive, primary site, and treatment [dates and types]) on eligible cases. Potential participants were approached using state-mandated recruitment methods consisting of two mailings sent three weeks apart followed by phone to discuss interest in participation. Study participation included completion of a risk-factor questionnaire, phone genetic counseling, and donation of a biological sample for BRCA testing. Bivariate analyses were used to analyze differences in contact and interest in participation. Results: Among 912 eligible women identified by FCDS, the average age at diagnosis was 42.6 ± 6.2 years and the majority of diagnoses were unilateral (96.4%), ductal (78.9%), stage1/2 (51.6%), and lymph node negative (58.6%). Furthermore, 13.2% were TN and 85.6%, 62.1%, and 23.7% had surgery, chemotherapy, and radiation therapy, respectively. Contact was established with 481 (52.7%) potential participants. Those in whom contact was not established were similar on all clinical and treatment characteristics other than a slightly younger age at diagnosis [42.1 ± 6.4 years versus 43.0 ± 5.9 years; p=0.03]. Of those contacted, 284 (59%) were interested, 100 (20.8%) declined participation, and 97 (20.2%) neither indicated interest nor declined or were deemed ineligible at first contact. Potential participants who indicated interest and those who declined participation at first contact were comparable based on all clinical and treatment factors. Conclusions: Our results suggest state-wide cancer registries are a feasible recruitment source to establish contact with a clinically representative population-based sample of Black women diagnosed with early-onset invasive breast cancer. Furthermore, contrary to prior reports, clinical features did not appear to affect interest in participation, highlighting the need to investigate the effects of socioeconomic, cultural, and behavioral factors on recruitment of minority populations. Citation Format: Devon Bonner, Tuya Pal, Christine Tallo, Susan T. Vadaparampil. The ut\ility of a state-wide cancer registry in recruiting a clinically representative population-based sample of young black women diagnosed with early-onset breast cancer. [abstract]. In: Proceedings of the Fifth AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2012 Oct 27-30; San Diego, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2012;21(10 Suppl):Abstract nr A33.

Understanding Asian American awareness of and experience with cancer clinical trials (CCTs): A mixed methods approach

6052 Background: Barriers to recruitment of minority populations affect generalizability, impact, and use of CCT findings for those populations. Methods: We undertook a mixed-methods approach to understand awareness of and experiences with CCTs. A self-administered survey using convenience sampling was provided in English to new cancer patients and their support persons at outpatient oncology clinics within a 9-county area of an NCI-designated cancer center. Observations of accrual processes to CCTs were conducted using the grounded theory approach. Results: 1006 surveys were completed and 59 unique patients observed. Comparison of survey results for Asian and non-Asian respondents showed Asians less likely to have heard the term “clinical trial” (59% Asian versus 69% all others) and more likely to define a clinical trial as “an experiment” or “a test procedure in a clinic” (n=45, 75%) than Whites (n=570, 61%) or persons of other ethnicities (n=107, 60%). Asians were more likely to have employer-based ins...

Conducting Research with Urban Elders

The National Institutes of Health 1994 guidelines require inclusion of minorities in research. People seeking grants need to be aware of techniques for recruitment of minority populations. The Boston University Alzheimer's Disease Center addresses difficult recruitment issues that arise from a skeptical minority population. The approach uses home visits to circumvent many of the barriers to recruitment and retention of participants in research studies.