I: Welcome everyone to the APAMSA AANHPI Health Issues Interview series, where we’ll be interviewing researchers, policymakers, community-based organizations, and other experts on health-related topics that affect the NHAAPI community. My name is Grant Wen and I’m the health advocacy director at APAMSA National. For this interview, I have the pleasure of welcoming Siya Qi. Siya is the Senior Program Manager for the All of Us research program at the Asian Health Coalition (AHC). She works with Asian engagement and recruitment core partners across the nation to engage and educate Asian Americans, Native Hawaiians, and Pacific Islanders on the  All of Us research program.

I work at the Asian Health Coalition and also the Center for Asian Health Equity in the Chicago area. I am an immigrant from China and I moved to the States five years ago. And I got into this field because of my grad school research on senior care and senior living. During that process, I interviewed a lot of Asian immigrants, especially elders, and then I found a lot of health equity issues, not only for seniors, but also for young immigrants too. That’s how I got interested in this, and then after graduation, I was really lucky that I found this program and this organization. I applied for the job and luckily got accepted and it’s been one and a half years now.

The project that I’m working on now is called the All of Us research program. It was actually initiated by the National Institute of Health and hopes to invite at least 1 million individuals living in the US to help build one of the most diverse health databases in history. This program aims to provide diverse databases to researchers with diverse backgrounds, and hopefully, the researchers can use the data in the database to make discoveries to find patterns and discoveries on things like cures to certain diseases like cancer and dementia. By including underrepresented communities, they hope to better address health disparities for future generations especially. So that’s what I’m currently doing.

We are involved in this program as one of the National community engagement partners. We’re working with our 15 partners across the country to engage and educate Asian Americans, Native Hawaiians, and Pacific Islanders. NHAAPI communities have continued to be underrepresented in research, which has really caused a lot of problems. I’m not sure you guys do, but I know friends who take medicine from our home country, just because some medications don’t work for us in the States. And normally, we think that’s normal. And we never think about how we can better address it or how we can solve it and why it’s causing it. It’s really because we are underrepresented. We’re not involved in these types of research. I think the All of Us research program is a really good opportunity for us to gain representation, to be seen, to be heard. And then for the future generations, hopefully our kids or grandkids won’t need to travel back to another country to truly find the medicine that really works for them. That’s the hope, so we’re working with the community to really spread the word and promote this program.

As for the Asian Health Coalition, it is a community based organization located in Chicago. We do have cancer prevention (colorectal cancer screening), Hepatitis B, and a million other programs. We normally do a lot of health education, health literacy, and health promotion in local communities, especially for underrepresented and underserved communities locally in Chicago or Illinois. Not only do we focus on the NHAAPI communities, we also do work with African American, Hispanic, and other communities historically underrepresented and underserved, providing them with health resources and education.

There have definitely been new challenges after COVID. In the past, community work was 90% in-person events, like gatherings at community centers where individuals could share food or celebrate festivals and special holidays together. But due to COVID, people couldn’t gather and don’t feel comfortable doing so. So that was a huge challenge, especially for some of our community members, as the majority of clients we serve are the elderly with limited English proficiency, and really limited knowledge and even access to internet and digital devices.

COVID really changed everything for our organization also. First, we couldn’t work in our office building, so we had to work from home.Second of all, we had to transition events and projects to digital platforms, and to do so, the initial steps we took were to do digital literacy programs for the seniors in the communities that we serve. I know that some of our partners called the seniors individually and gave them instructions on how to use Zoom, how to create an account, etc. And then they went into health education and even social gathering through zoom and other digital platforms. So that was really new to us. But surprisingly, they all adapted to the digital world fairly quickly. The seniors seemed to become very familiar with the platform, and they really enjoyed talking to each other. So that’s really going smoothly for now, but with things slowly transitioning back to reopening, I’m sure there’s going to be new challenges, and we will see how we can adapt to any new situations.

We also have been supporting local businesses since the pandemic. For example, we ordered 1000s of masks from a local Vietnamese shop. That’s one of the ways that we’re supporting the local community. We also collaborated with the local businesses in Chicago, where they helped us distribute the resources that we created, such as handouts with in-language materials and resources for local communities. 

Right after the pandemic hit, everyone—-but especially the communities we serve (elders with limited English proficiency)—- had been isolated at home. So we collaborated with APAMSA to create a student ambassador program for students to call seniors who felt isolated to make sure they felt supported enough to meet their physical and mental needs. Especially after the anti-Asian violence, there was a huge increase in mental health needs for the coming from the elders in our communities along with even more hesitancy in going out. We’ve received some good feedback, especially with the program that we’re doing with APAMSA. Seniors across the country appreciated the company and the conversations they had and also the students helping them process COVID information and also the vaccine.

As an organization we responded and had events and ongoing protests, like many other groups across the country. There were also digital platforms where people could sit together to share and process as a group to think about how to move forward. We also did an Asian Profile Series on social media to introduce the diverse culture and uniqueness that each subgroup within the Asian community has. On social media, we also shared some of the great work our partners have been doing. One thing that we don’t want is to really focus on the bad side of things. We want to really create a positive environment, and for everyone to take a minute to appreciate culture and diversity rather than dividing one group from the rest. 

In particular, Chinatowns across the country were severely impacted, because you see these videos of seniors getting hurt on the streets, and you feel this sense of danger when you walk on the streets. Even for myself, being an Asian female, I had this sense of vulnerability walking in the streets even before the pandemic. And then after all of this violence, I felt even more insecure in open spaces, and I think that was really common for residents in Chicago. In Chicago locally, we had a lot of protests against AAPI violence. We appreciated all the people who traveled across the country to support this initiative. In the past, Asian communities tended to be quiet, because we did things within our communities, we solved our own problems, we weren’t really vocal, but this time, we really stood together to fight against these crimes as a whole group. That was really inspiring and touching to see. After protests, although things were not back to normal, you feel a bit better. As an organization, we also dedicated one staff meeting to really talk about anti-AAPI violence, in part because unfortunately some of our colleagues had experienced some of that. We also ordered T-shirts with “Stop Asian hate” from a student group in Chicago, so that was one of the many ways that we supported this initiative alongside our local community.

When we were really promoting the “All of Us” research program, we used vaccines as a way to encourage them to join the research program. We said that just because past medications might not have worked, but if NHAAPI individuals are more represented in data, we might be included in future vaccine development initiatives. 

When the vaccines actually came out, community members started to ask questions like, “How do you know this vaccine is gonna work for us?” This really required us to put ourselves into the shoes of the committee members. We hadn’t faced such a pandemic and challenge—-for our generation, our mother and father’s generation, or even that for our grandparents. 

What our partners ended up doing was a lot of online education on the vaccine—-how it works, how the trials were, how would that impact our Asian communities, and then how the vaccine could help. This was not to push them into getting the vaccine, but just to deliver the information and give them resources to decide on their own. They also were given in-language materials and invited experts to answer questions. I know we have one partner in Boston that serves the elderly population, and they ended up calling every senior resident, telling them about the vaccine and giving them education. Andy from APAMSA actually was part of that conversation, too. He helped explain how the vaccine works, how it would impact your health and that of the community. I think that community ended up having a very high rate of vaccination, so it was a huge success. And we could see those across the country without penalties. From our experience, hesitancy really was a challenge at the beginning. but if you give the community members enough resources and information, they can have their own way of responding and can make their choice.

I think hesitancy really decreased as time went on, but this might be a biased opinion because those who come to our organization are the ones eager to learn more and want resources. The rest of the community members don’t come to us normally, and I can definitely still see some hesitancy there, although I do think it’s getting better gradually. This is partially because with more people getting vaccinated, they can see the reactions and side effects.

I don’t think the government has done great helping communities with limited English proficiency. And this is why the community based organizations are here. I don’t think they don’t want to help, they’re just not equipped with the ability to do that. We know that when communicating with the community members, it’s not only about language, it’s also about cultural things. There are many aspects to take into consideration, from who you speak with, to the channels you’re using. If you’re talking to elders, they probably don’t have social media, so you can’t communicate through Twitter. Using print materials would be much better. It’s also about how you’re presenting this message.Are you using graphs and giving them a research paper? That’s not going to help, and that’s also why we step in as community based organizations. We create materials that are adapted linguistically and culturally for our communities. We have images that really resonate with them, they see similar faces, and we make sure to cover some of the more taboo cultural topics in a way that is digestible. 

Honestly speaking, I don’t think the local government did a good job, especially for our community members. This is primarily because they don’t have the flexibility and ability to reach our communities and especially for our native Hawaiian communities, they don’t really trust authority that much, understandably so given their history with the US government. We get that, so we’re taking the information from the government and translating it in ways that the community members are more likely to accept.

One lesson I learned from COVID and from health education and health equity work is the importance of collaboration, such as what we had with APAMSA. For the following months, we’re going to relaunch the student ambassador program, and we’re going to send out another round of applications. This time, we’ll have student ambassadors who are going to do three different things. One may be still involved with wellness, a second role would be doing health education, and the last will be video making and producing.  We’re also going to have a separate project that’s focused on student research. We hope to invite several students to join us as student researchers to utilize the “All of Us” database. I think over 300,000 participants’ data is in that database. Please join us, and you can contact me if you’re interested. We really love working with you guys.