Filipino Americans have been devastated by COVID-19, but the lack of data remains a problem

When I first pitched the idea of a series on the impact of COVID-19 on Filipino Americans for a data fellowship project, the committee that reviewed my proposal worried about whether or not there was enough data for me to build a project on.

It’s a justifiable concern. The lack of good data is a common problem when it comes to Asian American subgroups, since the country's data collection systems lump them all into a single category. This is an issue because aggregated data masks the unique needs of each subgroup within the data.

There is no centralized disaggregated COVID-19 death data available for Filipino Americans or any Asian American subgroup. Yet media stories have highlighted the impact of the pandemic on Filipino Americans — figures from the union National Nurses United have shown that while they represent 4% of registered nurses across the country, they account for about 25% of COVID-19 deaths among registered nurses.

I was glad to see coverage on my community given it hardly ever makes headlines, although I was conflicted because it took a devastating pandemic for media to give the level of attention Filipino Americans received throughout the last year. I also found myself wondering about the other ways in which Filipino Americans outside of the nursing community were affected, why they were affected, and how. It's something I sought to explore through this data-driven series for NBC Asian America, a vertical of NBCNews.com dedicated to the Asian American community.

My entire project was driven by two data sets: the 2017-18 California Health Interview Survey, an annual survey that offers insight into the health and health care needs of Californians, and the Filipinx Count Survey, one of the first nationwide surveys on Filipino Americans since the Filipino American Community Epidemiological Survey was carried out from 1995 to 1999. The Filipinx Count Survey was conducted by the UC Davis Bulosan Center for Filipino Studies.

I combined these data sets with community engagement work to craft a series that illustrated the impact of the pandemic on Filipino Americans in stories that hadn't yet been told: the resilience Filipino American nurses feel they've emerged from COVID-19 with, the mental health impact on the community, and the response efforts to the toll of the pandemic.

I had previously written a story that examined the impact of the pandemic on Filipino Americans by examining risk factors that likely explain the high death toll: an overrepresentation in health care, a high share who live in multigenerational households and high rates of underlying health conditions. I initially wanted to build on that by collecting my own data through engagement work. I partnered with community-based groups and sought to create surveys to find out what other essential industries Filipino Americans have a high representation in.

But with six months to complete my reporting, it was not something I was able to do. The groups I wanted to work with were heavily occupied with serving community members. I opted instead to focus my efforts on using the available quantitative data, and collecting qualitative data by holding focus groups and through a Facebook group.

The engagement I saw during the focus groups I held was encouraging. The participants substantially shaped the direction of my first and second stories, particularly because community members were vocal about the resilience they saw in themselves having made it through COVID-19. It's not a sentiment I've seen captured in news articles about Filipino Americans during the pandemic.

The Facebook group had two mutually beneficial purposes: To offer culturally tailored information to the community — something that has been hard to come by — and to serve as a safe space where members could ask questions and share pandemic experiences. I had hoped that by creating such a space, I could glean trends in experiences and gaps in information reaching Filipino Americans.

I had hoped there would be more conversation among members, but I found they preferred to engage mostly by reacting to shared links and participating in polls. I saw that posts pertaining to family received the most engagement. Through polls, one of the things I learned is that some members had either been shamed or knew someone who had been shamed for declining to attend family gatherings during the pandemic. I didn't mention those specific observations in the stories, but they reflect the importance of family and togetherness, which are themes I wrote about in the series.

Participation in the Facebook group was lower than I anticipated, but I learned from community leaders and researchers that low participation is a common problem in research. Several response efforts to address the impact of COVID-19 on Filipino Americans are focused on disaggregated data collection. But it's not only the lack of that data that's a problem: researchers struggle with finding community members to participate in research.

It's why I'm organizing a virtual event to talk about my reporting, in which I plan on emphasizing that the stories I wrote for this project were only possible because of the data researchers successfully collected. I also envision it as a space where researchers can highlight how important it is for Filipino Americans to participate in the surveys they're conducting. Without the community's participation, there’s no way for stakeholders to know where specific needs lie. It also makes it difficult for media to cover stories on issues facing the community.

Telling stories about the needs of Asian American subgroups like Filipino Americans — and other communities where data is limited or nonexistent — requires data. My hope is that this series helps emphasize the power of data in storytelling and encourages policy makers to push for a centralized hub for disaggregated data collection. I also hope it spurs members of communities where data is limited to nonexistent to advocate for more studies, participate in research, and understand how crucial data is when it comes to addressing inequities.