IN MAY 2018, THE NATIONAL Institutes of Health launched the All of Us research program to accelerate the development of precision medicine by creating the largest, most diverse resource for clinical research in the US.1 As an undergraduate nursing student, lead author Kimberly Llanto became involved with the program, which allowed her to educate and encourage participation from the Asian American community, one of the most underrepresented research populations.1 In this article, she discusses her experience supporting the All of Us initiative as a volunteer and the importance of diversity in clinical research.
Exploring diversity
Everyone knows someone who has been affected by a health disorder. However, some people seem to be the epitome of health and longevity, while others remain unaffected by illness despite potentially unhealthy habits. With a goal of enlisting a minimum of 1 million volunteers to share their health data, the All of Us initiative will allow healthcare professionals and clinical researchers to understand these phenomena and explore the ambiguities in healthcare (see About the All of Us initiative).1,2
Most treatment models are determined based on the average White male, but healthcare is not one-size-fits-all.1 Research, prevention, and treatment should reflect the diverse nature of the population in the US and around the world. Advances in precision medicine pave the way for more individualized healthcare by considering individual racial and ethnic backgrounds, lifestyles, environments, and genetic makeup when identifying and treating diseases.1
As a concept, precision medicine has been around for decades. Different racial and ethnic populations often have specific health needs. Minority communities remain largely underrepresented in clinical research, however, even in trials related to diseases and disorders that may disproportionately affect them.3 For example, Asian Americans belong to the one of fastest growing ethnic and racial groups in the US, yet this community remains underrepresented in clinical research-especially Asian American subgroups including (but not limited to) Chinese, Korean, and Filipino Americans.4
My parents immigrated to the US from the Philippines in the late 1980s, and I was born and raised in Long Island, N.Y., as a first-generation American (an American-born child of immigrants). The All of Us research program holds incredible personal significance because it will affect my family and our descendants through more effective and personalized healthcare.
A volunteer opportunity
As a nursing student, I was offered the opportunity to work with Project Asian-American Presence-New York (Project AsAP-NY) by a faculty member for whom I had previously volunteered. This initiative, funded by the American Association of Colleges of Nursing, was designed to engage established community- and faith-based Asian American organizations to disseminate information about the All of Us research program. I recruited student volunteers and facilitated volunteer duties for each event.
Project AsAP-NY's first achievement was an augmented reality experience in Madison Square Park to bring attention to the All of Us initiative during the Philippine Independence Parade in New York City. The event garnered support from hundreds of Asian Americans and other diverse populations in the city. Later, Project AsAP-NY invited seven Asian American organizations to New York University to provide education about the power of precision medicine, the importance of diversified research, and the intentions of the All of Us research program. Pre- and postsurveys evaluated interest and support for the program. The Project AsAP-NY team educated participants and inspired them to discuss the All of Us initiative with friends and families and potentially register as research participants.
Participating in Project AsAP-NY and seeing the impact of my work was inspiring. Nursing students of all backgrounds can help fuel the fire nationwide by educating themselves on the All of Us initiative and its incentives and encouraging their friends, families, and communities to become involved. Because nurses serve as a knowledgeable resource for patients, nursing students should develop their communication skills for patient advocacy. Supporting initiatives such as the All of Us research program can foster these skills.
How to get involved
The nursing faculty typically has projects that may require assistance, and students may find similar volunteer opportunities by contacting a professor. Student organizations may also provide a platform to educate fellow students and communities about the inherent need to advocate for improved care of vulnerable underrepresented populations.
Nursing students constitute more than half of the total number of students pursuing healthcare professions.5 As expert consumers of clinical research, we have enormous potential and influence to interpret evidence-based practices and bring attention to health disparities and other social issues.5
Significant strides
The All of Us research program represents a monumental step for the US, and it is especially valuable to minority populations. Healthcare professionals must remain culturally competent in the workplace and community to disseminate knowledge and encourage involvement. As trusted resources, nurses can be advocates for improved research and healthcare. My experience with Project AsAP-NY helped develop my patient advocacy, leadership, and communication skills, all of which are vital for any nurse on a multidisciplinary team. By raising awareness, the All of Us initiative can make significant strides toward reducing healthcare disparities through clinical treatments tailored to individual patients.
About the All of Us initiative2,6-8
The All of Us research program was founded to highlight precision medicine, and its participants partner with the initiative. It seeks to create a database that is reflective of the US population. As such, diversity is a major component, with a focus on gaining a broader understanding of the healthcare needs of individuals from different races, ethnicities, ages, gender identities, sexual orientations, geographic locations, socioeconomic statuses, education levels, disabilities, and health statuses.
Learn more here:
National Institutes of Health: About the All of Us Research Program
https://allofus.nih.gov/about
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