Strategies for Ensuring Diversity, Inclusion, and Meaningful Participation in Clinical Trials Proceedings of a Workshop (2016) / Chapter Skim
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5 Potential Best Practices and Policy Options
5 Potential Best Practices and Policy Options
Pages 41-52
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From page 41... ...
In particular, all speakers emphasized the critical role of community involvement throughout the research process for meaningful inclusion of minorities in clinical trials. POTENTIAL BEST PRACTICES AND POLICIES FOR INCLUSION OF ASIAN AMERICANS INTO CLINICAL TRIALS Urban Asian Americans and Pacific Islanders in the Midwest -- which are the populations at the center of the work done by Karen Kim, dean for faculty affairs and head of the Office of Community Engagement and Cancer Disparities at the University of Chicago -- have several characteristics that increase the difficulty of involving them in clinical trials.
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From page 42... ...
As an example of a specific issue, Kim mentioned that the Asian American community has a low rate of colorectal cancer screening compared with other racial and ethnic groups. Surveys revealed that many Asian Americans thought that screening was something they would do only when they exhibited symptoms of a problem.
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From page 43... ...
In addition, cultural competency training for the members of IRBs can help them understand the issues involved. As an example of what is possible, Kim cited the language capacity of students at the Pritzker School of Medicine at the University of Chicago, where nearly half the incoming medical school class is able to speak Spanish.
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From page 44... ...
POTENTIAL BEST PRACTICES AND POLICIES FOR INCLUSION OF NATIVE AMERICANS INTO CLINICAL TRIALS Many of the observations made about Asian Americans and Pacific Islanders apply as well to Native Americans and Alaska Natives, said T eshia Solomon, associate professor of family medicine and head of the Native American Research and Training Center at the University of A rizona. But American Indians and Alaska Natives are distinct in some ways.
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From page 45... ...
Solomon became interested in this issue when the original sampling design for the National Children's Study focused on Native American women from three counties in Arizona, who do not necessarily represent women from other areas, Alaska Natives, or urban Indians. To broaden recruitment, she and her colleagues developed a tool kit that could be used by the study centers in urban communities.
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From page 46... ...
Outreach can create links with many different agencies, activities, and groups, such as local health care clinics, community colleges, vocational and job training programs, American Indian and Alaska Native church groups, language programs, food banks, child care, parenting programs, and adult education programs. At the same time, word of mouth remains the best way to communicate with American Indian and Alaska Native populations, said Solomon.
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From page 47... ...
Several meetings, trials, and other activities in recent years have generated lists of best practices and policy recommendations for increasing minority representation in clinical trials, Brooks noted. One is to emphasize peer mentors and to recruit minority investigators.
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From page 48... ...
In addition, physicians were more likely to enroll a patient if they thought that the patient would not respond well to standard therapy or if they thought that the trial would not take a lot of a patient's time. African American physicians enrolled at high rates irrespective of the race or ethnicity of the patient, which while not directly answered by the study, may point to the approach of these physicians and their research team, said Brooks, especially in explaining the trial and its associated consents to patients.
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From page 49... ...
. Additional strategies to address enrollment that Brooks mentioned were the use of community advisory boards that take an active role in projects, input from patient advocates into protocols and materials, and centralized committees focused on disparities.
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From page 50... ...
These strategies can be both formal and informal, she added. The moderator of the panel, Francisco García, director and chief medical officer of the Pima County Health Department in Arizona, provided a concrete example of the advantages minority researchers can bring to the recruitment and retention of minorities in clinical trials.
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From page 51... ...
Finally, she mentioned making resources available to work directly with communities in culturally appropriate ways, including support for cultural competency training so that researchers know how a clinical trial could affect a community. García pointed out that the need to have measures of the return on investment to more diverse participation is "probably the greatest need in this arena." Industry understands on a marketing level the value of diversity, which could offer lessons for other groups.
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