Although there is a large and diversified group of Asian Americans and Pacific Islanders (AAPI) in the United States, clinical trials and medical research frequently underrepresent this group. This underrepresentation result in a lack of knowledge about how particular medications and therapies affect AAPI people, potentially resulting in less effective or even hazardous medical interventions.
One of the main reasons AAPI individuals are underrepresented in clinical trials is language barriers. Patients may not speak English fluently, and clinical trial materials may not be translated into their native language. I witness this situation a lot while doing a medical scribe job and it could apply to every ethnicity and race.
During my gap year, I began working as a medical scribe at Dr. Park's Clinic to enhance my knowledge of a physician’s role for the patient and community. One day, I met a Korean patient 'Noah,' who was experiencing chest pain. A year ago, he had seen other physicians and had difficulty explaining his symptoms in English. He also did not understand the doctor's explanation. Dr. Park ordered a CT scan and biopsy, and it took a month to get a result due to his insurance policy. When the results finally arrived, he was diagnosed with stage IV lung cancer. When he heard the results in Korean, his jaw fell in shock. I understood his struggles because I, too, had experienced language barriers as an international student.
Additionally, cultural and religious beliefs may affect AAPI’s willingness to participate in clinical trials. To address these barriers, efforts must be made to increase awareness of clinical trials among AAPI communities, including the provision of information in multiple languages.
Other barriers may include a lack of access to healthcare, mistrust of the medical system, and lack of awareness about clinical trials. To increase AAPI representation in clinical trials, researchers should consider interacting with AAPI communities, providing translated materials and language support, and addressing cultural and religious beliefs that may impact participation.
By addressing these barriers and actively working to increase representation, researchers can ensure that medical interventions are equitable and effective healthcare for all populations.
Sarah You is an IgAN patient who has used her challenges with IgA nephropathy to help others. Sarah was diagnosed with IgAN when she was 21 years old, living as an international student in the US. She flew back to receive treatment and be with her family in Korea following her diagnosis. Now that she understands how to manage her IgAN, she has a master's degree in immunology and is currently applying to medical schools so she can be a support system for other rare disease patients. Read Sarah's story here. For IgAN-friendly meals head to Sarah’s Instagram @healthkidney_recipe.