April is National Minority Health Month, a time to raise awareness about the importance of improving health outcomes for racial and ethnic minorities. This year’s theme, Better Health Through Better Understanding, highlights the importance of providing culturally and linguistically competent services. Providing healthcare services, information and resources in a culturally/linguistically appropriate manner can lead to more empowered and knowledgeable patients, which translates into better health outcomes.
Patients want to be engaged and empowered to be active participants in their care. However, some of the barriers to achieving this include low health literacy, lack of clinician awareness, and a dearth of healthcare materials tailored for individual communities (e.g., culturally relevant images, materials written at a high school level or lower). The CDC recently updated its definition of personal health literacy, in Healthy People 2030, as “the degree to which individuals have the ability to find, understand, and use information and services to inform health-related decisions and actions for themselves and others.” Health literacy in the U.S. is generally poor, and minority communities often have lower health literacy compared to Whites. A recent Milken Institute report suggests that nearly 90 percent of adults living in the U.S. do not have adequate health literacy to navigate the healthcare system. More than 20 percent of Hispanics, American Indian/Alaskan Natives, and Blacks have low health literacy.
The CDC further defines organizational health literacy as “the degree to which organizations equitably enable individuals to find, understand, and use information and services to inform health-related decisions and actions for themselves and others.”
“Patients want to be engaged and empowered to be active participants in their care.”
––Deidre Washington, PhD, Director, Health Equity, AdvaMed
The medtech field supports efforts to improve awareness among patients regarding the technologies available to treat their health conditions, especially within minority communities where the need may be the greatest due to persistent health disparities. This awareness includes ensuring that patients, their caregivers, and the clinicians treating them are aware of all available treatment options and that information about these options is provided in a clear and understandable manner. Raising awareness by partnering in education with stakeholders is one of AdvaMed’s four Principles on Health Equity.
This awareness is critically important in the clinical trial stage. Unfortunately, it is well-documented that clinical trials often lack the racial and ethnic diversity seen elsewhere in this country. The good news is an increasing number of companies recognize the need for more diversity in clinical trials and are taking steps to cast a wider net in recruiting participants. With greater participant diversity, there is increased understanding of how a medical device may impact different types of patients participating in the clinical trial. Achieving racial and ethnic diversity in a successful clinical trial also increases the representativeness of the data and in turn increases understanding of how the technology will perform in a larger percentage of the affected patient population.
Understanding and engaging the target community will provide invaluable insights into methods for outreach and promotion, and recruitment and retention to these same communities. Recommendations for increasing diversity in clinical trials include:
- Engaging trusted community leaders from the very beginning when designing the study and planning for recruitment. Early community engagement can be particularly helpful in identifying locations for recruitment and designing materials (e.g., informational brochures) that reflect the communities being targeted. Also, given varying levels of literacy, other non-written modalities for recruitment can be explored when appropriate, such as social media, radio or announcements at gathering places within the community (e.g., community centers, local businesses, houses of worship).
- Developing materials in languages commonly spoken in communities being targeted when appropriate, especially those with limited English proficiency. Languages will vary based on the targeted community, including Spanish, Chinese, and Tagalog.
- Identifying and partnering with clinicians and other healthcare providers within minority communities, such as those at community health centers and federally qualified health centers, for recruitment.
These are only a few recommendations; many more can be found in AdvaMed’s report Approaches to Increasing Diversity in Clinical Research and Addressing Health Inequities.
In summary, it is imperative that all of us use the resources we have to help everyone, especially those in minority communities, understand the choices available to them, including participation in clinical trials. When everyone has access to information and can make informed decisions, and has access to the technology they need, we will be that much closer to achieving health equity for all.
Learn more about Health Equity.
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