AAPI Heritage Month: Asian Representation and Inclusion in Research

Sarah You
May 18, 2023
Blog post originally written by the AllStripes community team. AllStripes was acquired by PicnicHealth in 2023.

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.


Sarah You

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Create a List

List the names of all the doctors, hospitals, and other facilities your loved one visits regularly, along with those they have visited in the past. Try to go back as far as you can, striving for at least the last 5-10 years, but do your best. Even if you can’t remember them all, having a strong baseline can help you quickly identify gaps in records.

Ensure You Have the Appropriate Legal Status

It is important to make sure that you are fully empowered to make decisions on behalf of your loved one with Alzheimer’s. Your relationship status with the patient may not be enough to legally give you access to your loved one's medical information. It is a good idea to talk to an expert about securing special legal status, such as Power of Attorney (POA), a legal document that allows an individual to name someone as their decision maker should they no longer be able to make decisions on their own.

Gather and Organize the Medical Records in One Place

It’s important to have all of your loved one’s medical records together in one spot. This makes it much easier for you and your loved one’s physicians to accurately map the patient’s medical journey and more easily share information between doctors. Fortunately, tools exist to make record management and access simple. A free resource like PicnicHealth helps you collect and organize all of this information. PicnicHealth’s intuitive timeline allows you to pinpoint data across the medical history, eliminating your need for keeping heavy binders filled with paper records or keeping track of multiple software portal logins.

Review the Medical Records to be an Informed Advocate

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Build a support network.

When you’re juggling appointment times and insurance claims, putting a robust support system together might not strike you as the most urgent task. Investing the time to cultivate relationships with people can turn to in times of need will pay dividends. The next time you need a last-minute ride or just someone to listen, you won’t be on your own.

There are many condition-specific support groups and support groups for caregivers generally in person or online. In addition to the encouragement and empathy they provide, support groups can be a helpful source of tips, resources, and recommendations for navigating caregiving.


Stay organized.

The backbone of effective caregiving is organization. Keep medical information, appointment schedules, and medication lists in order. Use a planner or a digital service like PicnicHealth to stay on top of your responsibilities. This attention to detail can prevent future complications and reduce day-to-day stress.


Explore treatments and clinical trials.

We’ve seen incredible breakthroughs in treatment over the past couple of years, powered by patients and their caregivers participating in research. Stay in the loop about the latest in medical advancements and available resources that could benefit your loved one. Whether it’s a new therapy option or a community service that aids independence, being informed can make a world of difference in the quality of care you provide.


Make time for self-care.

It may seem self-centered to focus on self-care—but when you feel good, you can be a better caregiver. Whether it’s exercise, a mindfulness practice, a soak in the bath, or just time to rest when you need it, carve out those moments in the day when you can unwind, reset, and stay healthy mentally and physically. Think of it as building up your reserves of kindness, patience, and understanding—which can only benefit your loved one. No one can pour from an empty cup.

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LC-FAOD Odyssey: A Preliminary Analysis, presented at INFORM 2021

Data from real-world medical records:

(from 13 patients with LC-FAOD)

16 yrs old

Median age at enrollment

38% Female

15 providers / patient

7.5 years of data / patient

Data from patient-reported outcome (PRO) survey

(from 13 patients with LC-FAOD)

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However, it's important to consult with a healthcare provider or registered dietitian to determine the appropriate amount of protein for your individual needs. In general, a diet with moderate protein intake (about 0.8 grams per kilogram of body weight per day) is recommended for people with kidney diseases.

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