By: Theresa Wizemann, Kyle Cavagnini, Alex Helman, and Carolyn Shore

As stated in the 2022 National Academies of Sciences, Engineering, and Medicine (National Academies) report Improving Representation in Clinical Trials and Research: Building Research Equity for Women and Underrepresented Groups, “An equitable clinical research enterprise would include trials and studies that match the demographics of the disease burden under study. However, we remain far from achieve this goal” (NASEM, 2022). Despite decades of work and ongoing efforts on the part of policy-makers, patient groups, nonprofits, and industry sponsors to improve racial and ethnic diversity in clinical trials, there has been little change over time (Dzau, 2022). Furthermore, inconsistencies in data collection and reporting makes it difficult to track progress of demographic group participation in the United States for clinical trials. Given the urgent need, there have been calls for collective action across sectors and organizations “to align on goals for system-wide sustainable change.”

On May 20, 2024, the National Academies Forum on Drug Discovery, Development, and Translation, in collaboration with the National Cancer Policy Forum, convened a public workshop to explore opportunities to improve racial and ethnic diversity with a focus on system-level change and collective efforts across organizations and sectors that no one entity can effectively take on alone (see Box 1-1). The workshop builds on meetings hosted by the Clinical Trials Transformation Initiative (CTTI) in June 2023, the Multi-Regional Clinical Trials (MRCT) Center of Brigham and Women’s Hospital and Harvard University in September 2023, and Faster- Cures of the Milken Institute in November 2023.

National Academies of Sciences, Engineering, and Medicine. 2024.

By Lu Dong, Jennifer Bouey, Grace Tang, Stacey Yi, Douglas Yeung, Rafiq Dossani, June Lim, Yannan Li, Steven Zhang

Since the onset of the coronavirus pandemic, Asian American communities have faced a new wave of anti-Asian hate throughout the United States. Given diverse communication channels that are clustered by ethnicity, language preferences, and immigration generations within Asian American populations, there is a pressing need for culturally and linguistically appropriate strategies to raise awareness of available services to address anti-Asian hate. Community-based organizations (CBOs) play a crucial role in this regard, but they require tailored strategies to effectively reach and support Asian American communities. The authors conducted a community survey in Los Angeles (LA) and New York City (NYC) to provide CBOs that serve Asian and Asian American communities with important insights to enhance outreach and support strategies, ensuring that these strategies are accessible and effectively meeting the needs of community members who are affected by anti-Asian discrimination and violence.

Key Findings

• Among survey respondents, who were mostly from Chinese, Korean, and Thai ethnic groups, 37 percent of participants reported experiencing an anti-Asian hate incident; rates were similar in LA and NYC.

• English-speaking respondents, younger (18–24 years old) respondents, and respondents from higher income brackets were more likely to report experiencing an anti-Asian hate incident.

• About 61 percent of respondents indicated that they would report a hate incident to the police, and 61 percent would also seek help from CBOs that provide support services to hate-crime victims. Only 37 percent of respondents would use local community service numbers (211 or 311), and 13 percent indicated that they would not take any action. First-generation immigrants were more likely to take actions than were later generations.

• Major barriers to reporting incidents include language issues, lack of time, and lack of awareness of available resources. Approximately 45 percent of participants were unaware of community-based resources available to address anti-Asian hate; there were more-significant knowledge gaps in LA than in NYC.

• Despite most Asian Americans appreciating community-based counter-hate-incident services — such as medical support and counseling — actual use rates were low.

• Respondents from later immigrant generations (1.5, second, and third or later generations) reported more barriers and expressed more concerns about seeking support from CBOs after experiencing anti-Asian hate incidents.

Recommendations

• Strengthen services to meet the needs of members of two Asian American subgroups who might need more-tailored outreach and support: English-speaking later generations of Asian Americans who have more exposure to discrimination and older adults who might have difficulty recognizing and expressing their experiences of racism.

• Leverage close family ties and use diverse linguistic and cultural social media platforms to enhance outreach and information dissemination about anti-hate resources at CBOs.

• Empower first-generation community influencers to enhance outreach.

• Enhance CBOs' policy advocacy through strengthened data collection.

Santa Monica, CA: RAND, 2024,