Minority Participation In Research Research Articles

CHD8 gene; minority participation in research; machine-learning autism screen

CHD8 gene; minority participation in research; machine-learning autism screen

Reflections and Recommendations to be Representative of the Community in a Community-Based Sports Program

Conducting research with minoritized groups presents various challenges, such as a lack of trust and skepticism regarding benefits to their community (Yancey et al., 2005). Previous studies have provided evidence-based suggestions on overcoming barriers in collecting data on minority populations (Escobar-Chaves et al., 2002). This reflexive case study examines the effectiveness of using such scholarly recommendations for recruiting minority participants in the design and implementation of a life-skills through sports intervention program. Despite our efforts to reach a representative sample by applying specific recommendations, the obtained sample had a higher proportion of White participants (70% vs. 44.5%) and higher income levels (83.3% paid full lunch vs. 40.6%) than the overall prevalence found within the target community. Reflecting on the authors’ position within the study and exploring the methodological implications of existing strategies to enhance minority participation in research, this paper seeks to explicate the difficulties and challenges that can arise when turning theoretical recommendations into practice.

Underrepresentation of ethnic minorities in hypertension research—a survey of enablers and barriers among South Asian and African communities in Glasgow

BackgroundHypertension is the biggest contributor to the global cardiovascular burden with evidence for ethnic differences in treatment response and outcomes. Under-representation of ethnic minorities in clinical research is well known, and despite wide-ranging public engagement events by the Glasgow Blood Pressure Clinic team, there was a lack of participation of ethnic minorities in both engagement activities and clinical trials conducted by them. This study aims to explore the awareness and knowledge of hypertension and the facilitators and barriers to participation in hypertension clinical research among South Asian (SA) and African (AFR) communities in Glasgow.MethodsA survey questionnaire was co-developed with representatives from South Asian (SA) and African (AFR) patients and community members in Glasgow to understand awareness and knowledge of hypertension and enablers and barriers to participation in clinical research. The survey was distributed to adults (aged > 18) years of SA or AFR ancestry at public engagement events at venues that were frequently visited by these two communities in Glasgow.ResultsThe survey response rate was 337 (67.4%) consisting of 242 (71.8%) South Asian (SA) and 56 (16.9%) African (AFR) respondents. Thirty-nine questionnaires were excluded because of incompletion. Most of the respondents were not born in the UK and were in the 35–53-year group (AFR 29 (51%), SA 113 (47%)). The proportion living in the most deprived (SIMD 1) and least deprived (SIMD 5) was respectively 26 (12.4%) and 34 (16.2%) for SA and 20 (42.6%) and 2 (4.3%) for AFR. There was a considerable recognition that treatment needs to be ethnicity-specific (SA/AFR = 107 (48%)/23 (45.1%)) and that current cardiovascular disease treatment guidelines were not tailored for different ethnicities 84 (38.5%)/23 (45.1%). The key enablers encouraging research participation are enhanced health information, conducting aspects of their clinical research visits/appointments at a location they frequently visited and allowing a family member to accompany them. Barriers included concerns about the use of personal information and side effects of the new treatment.ConclusionOur survey confirmed enablers and barriers to ethnic minority participation in research. We find improving and evolving awareness and beliefs among the ethnic minority population including community leaders. Thus, continual review of researchers’ beliefs and attitudes is also essential to ensure engagement activities keep up with these changing perceptions.

Abstract PO-034: Is clinical trials the answer to cancer: Preliminary results from City of Hope Multi-ethnic Community Engagement Program

Abstract Background: The biomedical community is struggling to develop viable strategies to increase ethnic minority enrollment in studies – a result of both historical and current medical injustices in communities of color. Therefore, we aimed to reach multiethnic community health leaders to determine barriers and facilitators of research participation by providing an educational program that focuses on the importance of ethnic minority participation in research. Methods: We conducted a stakeholder evaluation study as part of a community research engagement education program. An online survey was administered to community ambassadors (N=88) representing multiethnic health organizations from across Southern CA as well as an On-Demand “Community Research Navigator (CRN)” education program; that brought awareness of the importance of clinical trials. Participants were identified and provided the survey link by the leadership of our partners. Participants were asked to rank barriers and facilitators of research participation of their communities from least to greatest and complete the educational component. Results: Respondents were Korean-American (35%), African-American/Black (33%), Filipino-American (18%), and Latino (14%). Respondents were mostly female (88.10%) and 45-55 years old (33.33%). Participants ranked fear of biomedical research, lack of provider invitation; lack of diversity in the researchers doing the research, language, cost/coverage barriers as the top 5 barriers. The top 5 methods endorsed by participants to increase minority research participation were increase knowledge and awareness for patient and family; provide coverage/compensation; increase diversity among researchers, provider and broad media, referrals, and ensure practical facilitators. We found CRN training results showing increases in 28% of respondents feeling prepared to help their community overcome barriers to accessing medical research, 29% feeling prepared to help their community with trust and willingness to participate in medical research; and 26% feeling prepared to navigate their community into trial studies. Conclusions: Findings suggest that barriers to research participation are influenced by multiple factors including structural (health system, lack of minority scientists), societal determinants (discrimination, cost), and social (interpersonal, familial, cultural) and emotional (fear) factors. Therefore, strategies to increase minority participation in biomedical studies must attend to barrier domains. Our community Ambassadors emphasized, that the social component refers to the significant systemic barriers especially the intersection of cost and racism in the medical sector rooted in societal determinants including medical/scientific discrimination. These findings provide a broader contextual conceptualization of barriers to inform novel strategies including CRN to increase community leaders preparedness for greater diversity engagement and participation in biomedical studies as an achievable answer to cancer disparities and cancer, overall. Citation Format: Kimlin Ashing, Marisela Garcia, Sophia Yeung, Alejandro Fernandez. Is clinical trials the answer to cancer: Preliminary results from City of Hope Multi-ethnic Community Engagement Program [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-034.

Abstract IA-51: If not now, then when? Tackling barriers to clinical trials to ensure inclusion of underrepresented minorities

Abstract The low representation of underrepresented minorities in clinical trials is well known. Unfortunately, there appears to be modest progress in the inclusion of these groups in the nearly 30 years since the NIH Revitalization Act of 1993. Racial and ethnic diversity in clinical trials is imperative for ensuring that novel cancer therapies, behavioral interventions and other types of scientific advances reach and are relevant to all population segments. It will be impossible to eliminate disparities and achieve health equity without diversity and inclusion in clinical research. Many barriers exist to clinical trials and some may be exacerbated among racial/ethnic minorities. This presentation will discuss multilevel barriers to participation in clinical research, share engagement principles related to partnerships with African American/Black and Latino/Latinx populations, and provide lessons learned from institutional and investigator led-initiatives. Data sources include chart reviews, patient interviews and surveys. Selected clinical studies will be discussed along with qualitative and quantitative data. The overall goal is to identify actionable steps towards a collective path of improving minority participation in clinical trials. Strategies that optimize opportunities for system change may have greater impact than strategies that focus solely on patient and/or community attitudes or behaviors. Given the COVID-19 pandemic, public awareness about clinical trials may be at a record high. Thus, community conversations about science and the clarion call for social justice may be the energy needed for cancer scientists to collaborate and change the narrative regarding participation of underrepresented minorities in research. Citation Format: Vanessa B. Sheppard. If not now, then when? Tackling barriers to clinical trials to ensure inclusion of underrepresented minorities [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 IA-51.

Abstract P29: Pre-COVID-19 pandemic vs. post-COVID-19 pandemic: Sustained participation of minorities in research in a CAP accredited biorepository in UC San Diego, California

Abstract Background: The UC San Diego (UCSD) Moores Cancer Center Biorepository (BR) is a College of American Pathologists (CAP)-accredited core providing a full array of biological samples services including tissue biobanking. Informed consent (IC) is obtained through an IRB-approved protocol. The MORE (Minorities Outreach Repository Effort) Initiative was launched in 2018 as an effort to increase the enrollment of minorities, and has since shown an accrual increase 213% as compared with previous years. As the ongoing COVID-19 pandemic has affected enrollment in many research studies we decided to reevaluate subject accrual. Methods: Data analysis was performed for Pre-COVID-19 pandemic enrollment from July 2019 to March 2020 and Post-COVID-19 pandemic enrollment from March 2020 to December 2020. Patients from the oncology clinics were identified by the BR or the treating teams, and pre-screened for potential enrollment. Eligible patients were interviewed by coordinators and an IC was obtained. In the IC, the patients were given the option of sharing the tissues for research with university researchers (UR) and/or for-profit (FP) organizations. Race and ethnicity data were acquired from the Epic electronic medical record (EMR). Patients were interviewed in English, Spanish, Russian, Vietnamese, Farsi, Tagalog, Simplified Chinese, or Arabic. Due to interviewing restrictions during the pandemic, protocol was amended to add added the possibility of remote IC via video/phone teleconferencing. Results: Global patient participation decreased by 30% due to the pandemic, with pre-COVID rates at 107.88 patient/month and Post-COVID rates of 31.25/month (69.56 ±38.31). Enrollment of Hispanic populations has remained remarkably similar (22 %; 22.18 ±0.18) for the same period. When compared with pre and post pandemic participation, data showed no significant difference among races (p=0.99). There was a slight increase in the rate of acceptance to share specimens with UR among Hispanics (30% Pre-COVID vs. 33% Post-COVID). The non-Hispanic cohort was associated with an increase (19% vs. 33%, p= 0.33) in their resistance to share with FP collaborations in Post-COVID-19 pandemic participation (Pre- COVID-19 19% vs. Post-COVID-19 30%). Conclusions: The MORE initiative is an efficient and effective way of increasing and sustaining the participation of minorities, despite COVID-19 research restrictions. Our ongoing efforts are focused on enhancing remote consenting methodologies, increasing subjects’ participation, and sustaining minority involvement in research for biobanking. Citation Format: Sharmeela A. Kaushal, David Anjakos, Mason A. Kyle, Diana Cortez-Moreno, Alfredo A. Molinolo. Pre-COVID-19 pandemic vs. post-COVID-19 pandemic: Sustained participation of minorities in research in a CAP accredited biorepository in UC San Diego, California [abstract]. In: Proceedings of the AACR Virtual Meeting: COVID-19 and Cancer; 2021 Feb 3-5. Philadelphia (PA): AACR; Clin Cancer Res 2021;27(6_Suppl):Abstract nr P29.

Abstract PO-071: Defining the current state of minority recruitment into clinical trials: Perspectives of cancer center research staff

Abstract The recruitment of ethnic minorities into clinical trials is a formidable challenge. African-Americans make up 12% of the U.S. population but only 5% of clinical trial participation. There is an even larger disparity in the Latino population. Latinos make up 18% of the U.S. population and only account for 1% of clinical trial participants. Research efforts to address ethnic minority underrepresentation in research is required for broad population scientific applicability and advancement. For example, nearly 1/5 of new drugs reviewed by the FDA showed racial/ethnic differences in drug disposition and response. Therefore, investigating the barriers of minority participation in research is imperative. Currently, there is a wealth of knowledge on barriers to participation from the patient’s or physician’s perspective. However, there is a dearth of information investigating the barriers to minority participation from perspective of research professionals who conduct the recruitment for studies. Clinical research staff at City of Hope were surveyed to gather information about barriers to the recruitment of minority and underrepresented populations into clinical trials. We developed a pilot survey of 52 questions to be answered by clinical research associates, coordinators and nurses. The pilot survey was distributed via a listserv in the Department of Population Sciences. The survey gathered demographics, types of clinical trials offered and barriers to minority enrollment. A total of 27 research staff completed the survey. The average age of the respondents was 31, most (85%) were female, Latino (52%) and single (56%). Fifteen percent of respondents were not willing to participate in research. The majority (78%) reported experience working with patients from minority and underserved populations, although (52%) said they did not currently target the recruitment of racial and ethnic minorities. The majority (52%) also said they do not target the recruitment of women and vast majority (78%) do not currently target the recruitment of sexual and gender minorities. Of those that reporting targeting the recruitment of minorities, most (100%) target Latinos, African Americans (62%), and Asians (54%). Most (52%) reported that recruitment entails extra work for the physician, 48% reported that language is a barrier to enrolling patients into trials and 33% reported insurance disqualification as a barrier. Findings suggest that even though research staff report working with these targeted populations, there are missed opportunities to accrue them to clinical trials. We plan on building upon this pilot by expanding the survey outside of Population Sciences to include all research staff at City of Hope. This will also include the addition of key informant interviews to further explore how the cancer center infrastructure can help facilitate the recruitment of minorities. This will allow us to examine systemic barriers and facilitators to clinical trial recruitment. Citation Format: Mayra Serrano, Alejandro Fernandez, Marisela Garcia, Katty Nerio, Rick Kittles. Defining the current state of minority recruitment into clinical trials: Perspectives of cancer center research staff [abstract]. In: Proceedings of the AACR Virtual Conference: Thirteenth AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2020 Oct 2-4. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2020;29(12 Suppl):Abstract nr PO-071.

Determinants of Trustworthiness to Conduct Medical Research: Findings from Focus Groups Conducted with Racially and Ethnically Diverse Adults.

Potential research participants, particularly those from racial and ethnic groups underrepresented in medical research, often decide to participate based on how they judge people, places, and study protocols as trustworthy. And yet, few studies have explored notions of trustworthiness or determinants of trustworthiness from the perspective of potential medical research participants. This paper describes how racially and ethnically diverse potential medical research participants conceptualize what makes researchers, research settings, and research protocols seem trustworthy. Using a criterion sampling strategy, we recruited African American, Latinx, and White adults for participation in focus groups conducted at a community center servings the Latinx community and at a health clinic that primarily serves the African American community. A total of 57 African American, Latinx, and White adults APPROACH: We conducted seven focus groups that explored perceptions and determinants of research, trust, privacy, confidentiality, and research participation. We used a phenomenological thematic analytic approach to explore the determinants of trustworthiness to conduct medical research. In our effort to identify the factors that affect potential research participants' perspectives on the trustworthiness of medical research, we found three themes: Who is trustworthy to conduct medical research? What influences perceptions of trustworthiness in medical research? And what institutions or settings are trustworthy to conduct medical research? These findings highlight that one's willingness to participate in research is driven in part by their perception of the trustworthiness of researchers, research institutions, and the information they are given about potential research opportunities. There are important and modifiable determinants of trustworthiness that may facilitate minority participation in research. We found that research, researchers, and research institutions each have things that can be done to increase trustworthiness and minority participation in research.

Abstract A042: Increasing the participation of minorities in research in a biorepository in UC San Diego, California

Abstract Background: The UC San Diego (UCSD) Moores Cancer Center Biorepository (BR) is a College of American Pathologists (CAP)-accredited core. The BR provides a full array of services including tissue biobanking following informed consent, under an IRB-approved protocol. However, internal review demonstrated low enrollment of minority populations. Methods: In January 2018, the BR launched the MORE (Minorities Outreach Repository Effort) Initiative to: 1) increase research participation by minorities, 2) evaluate the perceptions of research participation by minority groups, 3) evaluate the disease group distributions of minorities at our institution, and 4) increase the participation of minorities in clinical research. Oncology clinic schedules were prescreened, and patients were identified for potential enrollment. Eligible patients were interviewed and informed consent was obtained in collaboration with the treatment teams. The research consent form was translated from English into Spanish, Russian, Vietnamese, Farsi, Tagalog, Simplified Chinese, and Arabic to enable the participation of non-English speaking patients. Race and ethnicity data were obtained from the Epic electronic medical record. Perception of minorities towards tissue collection was evaluated as the percentage of patients who declined consent. Disease distribution was obtained from the California Cancer Registry (data specific for the MCC). Results: Since MORE began, we increased minority participation in our study by 213%. The percentage of declines was similar between Hispanics and non-Hispanics in general, although there was a significantly higher number of declines among Asians and non-Hispanic African Americans, 8% vs. 19% (p =0.01). Disparities were observed in disease distribution with Hispanics having lower incidences of skin cancers, soft tissues/bone sarcomas (12.94% vs. 86.57%; p =0.066), and the highest for liver diseases (41.76% vs. 57.14%; p=0.00001), as compared with all other populations. Surprisingly, the number of patients consulting for genitourinary (GU) and breast diseases is significantly lower in Hispanics, as compared with all other ethnic groups (16.08% as compared with 83.45% for GU, and 20.41% as compared with 79.14 % for breast). In addition, from 420 who self-identified as belonging to a minority group, only 37.5% needed translation. Conclusions: The MORE initiative has been demonstrated to be an efficient way of increasing the participation of minorities, and has allowed us to better understand research participation perceptions and disease distribution in this group. We are now moving to follow up these preliminary results with a full research trial, to start early next year. Citation Format: Sharmeela Kaushal, Jim Salinas, Katherine Crouthamel, Jason K. Sicklick, Alfredo A. Molinolo. Increasing the participation of minorities in research in a biorepository in UC San Diego, California [abstract]. In: Proceedings of the Eleventh AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2018 Nov 2-5; New Orleans, LA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2020;29(6 Suppl):Abstract nr A042.

The Effect of Discrimination on Likelihood of Participation in a Clinical Trial.

Despite efforts to increase minority enrollment in research, racial disparities still exist, and a belief persists that minorities are inherently less likely to enroll in medical research. This lingering view may impact the manner in which studies are presented to minority patients. This study aimed to assess racial differences in reported discrimination while seeking medical care and likelihood to participate in a medical research study. 844 residents were enrolled via convenience sampling, and asked to complete a survey designed to examine perceived discrimination while seeking healthcare and likelihood to participate (LoP) in a medical research study. Participants who reported worse treatment than other races had lower mean LoP scores (53.7 ± 17.6) than participants who reported being treated the same as (61.1 ± 16.1) or better than (64.0 ± 15.0) other races (p < .001). There were no significant differences in mean LoP score by race/ethnicity. The interaction of race with discrimination had no significant effect on mean LoP (p = 0.8). There was a statistically significant association between race and discrimination (X2 = 11.32, p = 0.023), although the majority of participants reported no discrimination. Patient experiences in the medical arena may have an impact on their willingness to join a medical study. An effective strategy to increase minority participation in research may be to work with investigators and staff on implicit bias with regard to minority patients. Further research should focus on the impact of research staff interactions on an individual's decision-making process.

Social Determinants of Health: A Framework for Studying Cancer Health Disparities and Minority Participation in Research

The theory of social determinants of health (SDH) posits that the health of people and communities is affected by social and economic factors (i.e., economic stability, education, neighborhood and built environment, health and health care, and social and community context). These interrelated constructs may negatively affect minority patients’ ability to participate in cancer research. Understanding SDH can help nurse researchers assess and address barriers to research participation, as well as design trials to improve minority patients’ cancer-related health.

Feasibility Test of a Community-Relevant Intervention Designed to Promote African American Participation in Translational, Breast Cancer Disparities Research: Know About Health Options for Women (Know HOW).

There are marked racial differences in breast cancer, the second leading cause of death among US women. Understanding the causes of these differences is essential to eliminate breast cancer inequities. More prevalent in African American than in Caucasian women, metabolic syndrome has been associated with breast cancer outcomes. Further research is needed to understand metabolic syndrome's role in breast cancer disparities, thus novel strategies to increase minority participation in research are important. We embedded two approaches (comprehensive, focused) to increase African American participation in breast cancer research in a state-wide service program and pilot tested both approaches in rural African American women. We conducted three comprehensive and three focused outreach programs (n = 48) and assessed research participation through consent and actual provision of data for four types of data: survey, anthropometric, blood, and mammography records. The majority of participants provided written consent for all data collection procedures (96% survey; 92% anthropometric; 94%, blood; 100% mammography). There were no between group differences in consent rates. There was variation in the overall proportion of participants who provided data (96% survey; 92% anthropometric; 73% blood; 40% mammography). Women in the comprehensive approach were less likely to return for a scheduled mammogram than women in the focused approach (19% vs 64%, p = 0.0236). Both outreach programs promoted African American engagement in research. Differences in the provision of data by type may have been due to participant burden (i.e., time required to provide data). Study designs that embed research in service programs have promise to increase minority research participation.

Abstract IA06: Leveraging the NIH CHE P30 supplement as a platform to stimulate a cancer center strategic plan for addressing community cancer needs and enhancing health equity

Abstract Federally supported health institutions, and in particular NCI designated Comprehensive Cancer Centers, are accountable for leading the Nation's effort towards improving our Nation's health. The NCI-Center to reduce Cancer Health Disparities (CRCHD) under the dedicated leadership of Dr Sanya Springfield has championed the science and practice of reducing health inequities and advancing health equity. In an effort to guide Cancer Centers to be more responsive to the cancer burdens of their local communities, the CRCHD launched the National Outreach Network that includes the Community Health Educator (CHE) Award. City of Hope is aligning with the CRCHD thru the CHE mechanism to advance our health equity strategy and research. Key to all CHE activities are community informed and community based approaches to enhance our Cancer Center's relationship and presence in our catchment area and the local community to increase: 1) Culturally relevant partners, 2) Community capacity building, 3) Cancer prevention and early detection, 4) community health improvements, 5) stimulate advocacy and community inclusion in research, 6) ethnic minority participation in studies and 7) survivorship care. Our CHEs have established a network of multisectoral partners totaling 128, in partnership with many of these partners we conduct over 80 events each year reaching over 5,000 households each year to achieve our common aim of healthier communities and accelerating the greater public benefit of scientific advancements. Our annual Minority Cancer Awareness week forum that gathers diverse stakeholders with over 180 advocates, medical providers, researchers, health educators and even policy makers to be informed and activated for community health improvement and scientific engagement. One of our key project is to increase ethnic minority participation in research by implementing our Partnered in Access, Inclusion and Research (PAIR) initiative. This project promises significant contributions towards our goal of increasing underrepresented minorities - knowledge, acceptability and participation in cancer research including clinical trials (CT) and biospecimen studies (BB) via the confluence of two processes, one institutionally and the other community targeted: 1) Institutionally, we are weaving the CHE aims into the Cancer Center's research to build a functional and sustainable program for addressing health inequity by cultivating basic, translation, clinical and behavioral research that are responsive to our underserved and medically vulnerable groups in our catchment area; and 2) At the Community level we engage in bidirectional co-education to develop, implement and disseminate a training curriculum that will enable a network of community research navigators who can be our community research experts and liaison to address gaps in knowledge, medical mistrust, access, participation and engagement of underrepresented populations in research to speed up the applicability and utility of science to address health inequities. Two specific CHE related activities include advancing: 1) The science and reach of a community-school based nutrition and physical activity, and health practices skill building project into wider community application with additional support for RWJF. This project emboldens teens, parents and community health workers to be seeds of change; and 2) Research engagement and enrollment by practicing these 7 core principles: cultural humility, linguistic and cultural competency, credibility, empathy, genuineness, graciousness and convenience that resulted in enrolling 153 Latinas within 4 community events. Our approach and CHE activities have and will continue to contribute to the relevance and applicability of biomedical research advances to inform better healthcare and community health improvements among our increasingly diverse society. Citation Format: Kimlin T. Ashing. Leveraging the NIH CHE P30 supplement as a platform to stimulate a cancer center strategic plan for addressing community cancer needs and enhancing health equity. [abstract]. In: Proceedings of the Eighth AACR Conference on The Science of Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; Nov 13-16, 2015; Atlanta, GA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2016;25(3 Suppl):Abstract nr IA06.

Establishment of a Predominantly African-American Cohort for the Study of Alzheimer’s Disease

Background/Aims: The recruitment of culturally diverse subject populations into research studies, particularly African-Americans (AA), has been the focus of intense interest by many groups. Methods: In this paper, we present the methodology utilized to create a predominantly AA cohort for the longitudinal study of risk factors in Alzheimer’s disease (AD). The underlying strategy was that of identifying geographically diverse clinical venues within South Carolina (SC) where large numbers of AA patients already come to seek medical care. Results: This strategy was successful, although recruitment rates for AA subjects (43.4%) still fell below those for white subjects (70.3%; p = 0.0025). Subject characteristics of AA subjects that chose to enroll were not substantially different from those that declined to participate. The demographic characteristics of this cohort were largely similar to those of the SC Alzheimer Disease Registry, a population-based database. The problems of standardization of subject recruitment and assessment across diverse clinical venues are also addressed. Conclusion: The utilization of geographically diverse sites for research recruitment where minorities already receive medical care is one practical solution to the problem of minority participation in research. Multi-site recruitment to improve minority recruitment can be accomplished with acceptable standardization and inter-rater reliability.

Community‐based IRBs: What Researchers Should Know

Community‐based IRBs: What Researchers Should Know

New schemes aim to boost minority participation in research

New schemes aim to boost minority participation in research

At the helm of the NIDDK

At the helm of the NIDDK

Relationships and communication in minority participation in research: multidimensional and multidirectional.

Relationships and communication in minority participation in research: multidimensional and multidirectional.

Racial variation in treatment preferences and willingness to randomize in the Spine Patient Outcomes Research Trial (SPORT).

Analysis of baseline data for patients enrolled in Spine Patient Outcomes Research Trial (SPORT), a project conducting three randomized and three observational cohort studies of surgical and nonoperative treatments for intervertebral disc herniation (IDH), spinal stenosis (SpS), and degenerative spondylolisthesis (DS). To explore racial variation in treatment preferences and willingness to be randomized. Increasing minority participation in research has been a priority at the NIH. Prior studies have documented lower rates of participation in research and preferences for invasive treatment among African-Americans. Patients enrolled in SPORT (March 2000 to February 2005) that reported data on their race (n = 2,323) were classified as White (87%), Black (8%), or Other (5%). Treatment preferences (nonoperative, unsure, surgical), and willingness to be randomized were compared among these groups while controlling for baseline differences using multivariate logistic regression. RESULTS.: There were numerous significant differences in baseline characteristics among the racial groups. Following adjustment for these differences, Blacks remained less likely to prefer surgical treatment among both IDH (White, 55%; Black, 37%; Other, 55%, P = 0.023) and SpS/DS (White, 46%; Black, 30%; Other, 43%; P = 0.017) patients. Higher randomization rates among Black IDH patients (46% vs. 30%) were no longer significant following adjustment (odds ratio [OR] = 1.45, P = 0.235). Treatment preference remained a strong independent predictor of randomization in multivariate analyses for both IDH (unsure OR = 3.88, P < 0.001 and surgical OR = 0.23, P < 0.001) and SpS/DS (unsure OR = 6.93, P < 0.001 and surgical OR = 0.45, P < 0.001) patients. Similar to prior studies, Black participants were less likely than Whites or Others to prefer surgical treatment; however, they were no less likely to agree to be randomized. Treatment preferences were strongly related to both race and willingness to be randomized.

Promoting the Participation of Minorities in Research

The current policy of the National Institute of Health designed to increase the participation of women and minorities is radically different from previous policies designed to protect minorities from abuses in research studies. The principal arguments to support this policy are twofold: 1) Increased representation of minorities and women in research would increase the generalizability of research data and allow for valid analyses of differences in subpopulations; and 2) being in a clinical research study is advantageous to participants regardless of the final research study results. It remains unclear whether minorities find these arguments compelling. Instead of telling minorities that participation in research is good for them, the research community should focus on understanding what minority communities want from clinical research and then tailoring the message to meet this need. Persuasive arguments to promote long-term increased representation of minorities in clinical research must come from within minority communities.