Abstract
The COVID-19 pandemic has exposed shortcomings in the US public health data system infrastructure, including incomplete or disparate processes related to data collection, management, sharing, and analysis. Public health data modernization is critical to ensure health equity is at the core of preparedness and response efforts and policies that prioritize equitable responses to health emergencies. To address the inequitable uptake and distribution of COVID-19 vaccinations in communities most disproportionately impacted by the pandemic, the CDC Foundation's Response Crisis and Preparedness Unit began partnering with community-based organizations in March 2021 to provide education and outreach and facilitate access to vaccines. These organizations engaged with partners and communities to address vaccine-related concerns, develop innovative and culturally appropriate communication strategies, and promote timely vaccination. Two grantees, Out Boulder County in Colorado and the Coalition of Asian American Leaders in Minnesota, experienced issues related to public health data collection standards and practices for COVID-19. Data collection tools often lack the appropriate or necessary demographic variables or level of disaggregation needed to be able to assess prioritization and disparities within racial and ethnic groups and across sexual orientation and gender identity categories. In this case study, both grantee organizations document their experiences, challenges, and strategies to overcome barriers to implementing their projects resulting from a lack of meaningful data. These examples identify inequities and systems-level changes related to data collection and surveillance, and they provide recommendations and lessons learned to improve data surveillance for more equitable public health responses.
Introduction
Surveillance systems that provide meaningful data identifying inequities and gaps are fundamental to the field of public health. According to Daniel Jernigan, MD, MPH, deputy director for public health science and surveillance, US Centers for Disease Control and Prevention, who shared his thoughts on the CDC Foundation's podcast, Contagious Conversations in 2022:
Data is the currency of public health. You can't fix what you can't count. […] In order for you to know what the problem is, you need to enumerate it and quantify it. And once you have that information, then you know whether things are getting worse or getting better.
1
The COVID-19 pandemic has exposed shortcomings in the US public health data system infrastructure, including incomplete or disparate processes related to data collection, management, sharing, and analysis.2,3 Disaggregated data for specific populations are crucial for documenting health inequities and providing evidence to ensure priorities are set that save and improve lives. 4
Public health organizations have published reports and recommendations that emphasize the need for equitable data infrastructure, especially incorporating lessons learned from the COVID-19 response. These reports, such as Charting a Course for an Equity-Centered Data System 5 from the Robert Wood Johnson Foundation and Addressing Gaps in Public Health Reporting of Race and Ethnicity Data for COVID-19 6 from the Council of State and Territorial Epidemiologists have suggested that factors, such as demographics, culture, and political affiliation, impact individual attitudes toward vaccination.
The CDC Foundation, an independent nonprofit and the sole entity authorized by US Congress to mobilize philanthropic and private-sector resources to support the US Centers for Disease Control and Prevention's critical health protection work, with support from 2 private donors, awarded grants to 22 community-based organizations (CBOs) (a subset of 114 funded in total) serving communities in 17 states to address the equitable uptake and distribution of COVID-19 vaccines. The grants were awarded in May 2021, and all grant activities ended by May 31, 2022. Early in the implementation period, challenges and barriers to project implementation related to data were shared with CDC Foundation program staff. Two grantees, Out Boulder County in Colorado and the Coalition of Asian American Leaders in Minnesota, experienced issues related to local and/or state public health data collection standards/practices on COVID-19. Data systems lacked the appropriate or necessary demographic variables or level of disaggregation needed to be able to assess prioritization and disparities within racial and ethnic groups and across sexual orientation and gender categories. In the case studies that follow, both grantee organizations document their experiences, challenges, and strategies to overcome data-specific barriers while implementing COVID-19 vaccine acceptance projects in their communities.
Case Studies
LGBTQ+ COVID-19 Vaccine Equity in Boulder County and Beyond
When COVID-19 began to disrupt the daily lives of people around the world, Out Boulder County (OBC) in Boulder, Colorado, adapted its services and programs for people who are lesbian, gay, bisexual, transgender, queer, and other identities (LGBTQ+) by offering virtual delivery and proactively advocating for health equity.7,8 Boulder County leaders established an 11-member COVID-19 community task force representing a range of communities and populations disproportionately impacted by the pandemic. The task force began meeting in August 2020 and included county staff, government leaders, and experts who engaged in discussions of how the pandemic was impacting underserved communities. For many LGBTQ+ individuals, the pandemic and ensuing mitigation measures, including lockdowns, social distancing, and isolation, exacerbated an already existing mental health crisis.9-15
In 2023, the National Science and Technology Council released a report 16 highlighting Executive Order 14075, Advancing Equality for Lesbian, Gay, Bisexual, Transgender, and Intersex Individuals. 17 The report provides a roadmap for federal agencies to create measurable sexual orientation, gender identity, and variation in sex characteristics data. While disaggregated data are available from some federal sources (eg, US census), the report highlights the importance of having disaggregated data from diverse sources (federal, state, local) for meaningful public health planning and prioritization, especially during emergencies. After unsuccessful attempts to access meaningful public health data at the county level about how the pandemic and ensuing shutdowns and lockdowns were impacting LGBTQ+ people, Mardi Moore, executive director of OBC, realized that LGBTQ+ people were invisible in discussions about the pandemic because health systems did not collect data about sexual orientation and gender identity. Being seen and documented in the data is critical because of how data are used to inform policy, research, and resource allocation. At the time, OBC was not aware of other data collection methods that could reflect their community's needs.
Because this information was not being collected, OBC developed and disseminated 3 online surveys between December 2020 and October 2021 about COVID-19 that included questions about sexual orientation and gender identity. These surveys were used as rapid needs assessments to collect data that would help inform the programming priorities for OBC to meet their community's needs. Because the surveys were community based, they had no institutional board to oversee issues related to consent. To address this, the survey team asked respondents to provide informed consent and ensured that the respondents' data were anonymous; however, respondents were able to provide their contact information if they wanted to receive follow-up information from OBC staff regarding their answers.
The first survey was the 11-question COVID-19 Vaccine Survey, one of the first in the United States to examine COVID-19 vaccine acceptance, hesitancy, and concerns of LGBTQ+ people. It was conducted between December 17, 2020, and January 7, 2021. The survey was advertised in OBC's e-newsletter and on social media. A total of 272 people completed the survey. Findings from the survey demonstrated that COVID-19 vaccine hesitancy was nearly twice as high for LGBTQ+ respondents (17%) compared with non-LGBTQ+ respondents (9%).
The second survey, LGBTQ+ COVID-19 Impacts Survey, was a follow-up to the initial survey. It included questions related to vaccine uptake, different vaccine brands, and the physical, mental health, and economic impacts of the pandemic. It was conducted between April 1 and May 10, 2021. The survey was promoted on social media and at COVID-19 vaccine equity clinics. A total of 297 people completed the survey. The key findings were as follows:
LGBTQ+ respondents ranked physical (75%) and mental health (74%) nearly equally as their top concerns, followed by social isolation (56%), job security (39%), and paying bills (29%). LGBTQ+ and non-LGBTQ+ individuals ranked their top 5 concerns over the course of the pandemic in the same order; however, a larger percentage of LGBTQ+ individuals identified each listed concern as an identified concern, not just the top 5. More (6%) LGBTQ+ respondents reported concerns with housing and domestic/relationship violence compared with non-LGBTQ+ respondents (1%). Another important finding from the survey was how the community ranked programs and services they felt would most support them.
The third survey, the Colorado Youth and Young Adult COVID-19 Vaccine Survey, was conducted 3 months after the Pfizer-BioNTech COVID-19 vaccines were made available for adolescents ages 12 to 17 years. 18 The survey was conducted between August 19 and October 31, 2021. A total of 420 people completed the survey. This survey included questions about vaccination rates, perceptions (ie, acceptance, hesitancy, resistance), and barriers to vaccinations among adolescents (ages 12 to 17 years) and young adults (ages 18 to 24 years), with special attention to the following identities or characteristics: LGBTQ+, BIPOC [Black, Indigenous, and people of color], primarily Spanish speaking, neurodivergence, disability, and economic disadvantage. All surveys were available online in English and Spanish. Key findings from the survey were as follows:
Adults in college or with postgraduate education reported higher vaccination rates (87%) compared with those in high school (67.5%) or adults not attending college (61%)
Survey respondents who identified as LGBTQ+ reported higher vaccination rates (77%) compared with non-LGBTQ+ respondents (65%)
Survey findings also revealed that youth who were economically disadvantaged had higher rates of vaccine acceptance and vaccine hesitancy as well as lower rates of vaccine resistance than their peers. The top barriers to vaccination identified by respondents were related to parents, concerns about side effects, safety, and overall effectiveness.
Together, the 3 surveys provided OBC and their partners with a rich pool of data to plan community interventions. These data shaped OBC's response to the COVID-19 pandemic and led to new programmatic and advocacy efforts for the LGBTQ+ community. Programmatic efforts included COVID-19 vaccine equity clinics that catered to LGBTQ+, BIPOC, and Spanish-speaking people. Other programmatic efforts included training for medical professionals on medical-related information, LGBTQ+ vocabulary, and etiquette. OBC also led a community outreach strategy that included targeted social media campaigns directly addressing LGBTQ+ COVID-19 vaccine concerns and related medical questions, such as how vaccines might interact with hormone therapy and HIV antiretroviral treatment and preexposure prophylaxis protocols. At the end of 2021, OBC learned from Colorado's health database statistics that a total of 15,721 COVID-19 vaccine doses were given to 9,978 individuals in 79 vaccine equity clinics hosted by OBC and other community ambassadors in 2021. Across the various community outreach activities and communications campaigns led by OBC, 319,350 people were reached and 219,350 impressions were made.
Additionally, OBC's commitment to improving public health systems for LGBTQ+ community members through the development, dissemination, and analysis of the COVID-19 surveys has led to efforts to update health forms, increase and make more inclusive gender options on health forms, and conduct legislative advocacy to require sexual orientation and gender identity data to be collected and reported to the Colorado Department of Public Health and Environment (CDPHE). OBC developed strong relationships with other community organizations throughout Colorado that serve historically underserved and underresourced communities with racial and ethnic minorities, Spanish-speaking communities, and people with disabilities. These relationships had major impacts on the details of legislation that would be introduced and become law.
At the end of 2021, OBC began collaborating with public policy experts and legislators to write and pass a state bill HB 22-1157—known informally as the Fairness in Data Collection Act 19 —into law, which mandates fairness in health data collection in Colorado. The bill requires that all entities reporting data to CDPHE must collect and report demographic data, including data on sexual orientation, gender identity, disability status, race, and ethnicity. Before this law was passed, CDPHE had no statutory obligation to collect data on several Colorado communities that have been historically underfunded and underserved and faced disproportionate health impacts. A working group that includes community leaders with experience in data collection will be organized and provide direction for CDPHE on best practices and standards for collecting these data. 19 Given that few systems have been built that intentionally include LGBTQ+ people, OBC saw the importance of using lessons learned during the COVID-19 pandemic to effect change by enacting and leveraging coalitions and, ultimately, legislation to codify inclusion. Future efforts will include data collection on sexual orientation and gender identity.
Case Study 2: Invisible No More—Coalition of Asian American Leaders in Minnesota
According to the 2021 American Community Survey, the Asian population makes up 5.5% of Minnesota's total population. 20 The Hmong ethnic group is the largest subpopulation in Minnesota, with an estimated 81,966 people, 95% of whom live in the Twin Cities metro area. Minnesota also has the largest Karen community in the United States, with more than 17,000 Karen people, the newest refugee community from Asia, and is home to more than 2,000 refugees from other ethnic groups from Burma (Myanmar), including the Karenni and Mon. 21
As with many racial and ethnic minority groups in the United States, the COVID-19 pandemic negatively and disproportionately impacted Asian Minnesotans with higher rates of infection and mortality. 22 The Coalition of Asian American Leaders (CAAL) contacted several government entities including local public health departments, the Minnesota Department of Health (MDH), and legislators to request support for outreach and education efforts for hard-to-reach immigrant and refugee communities, including the Hmong, Karen, and Karenni. CAAL requested data so they could understand which communities were being impacted the most by COVID-19 and which communities had access to testing stations and vaccination efforts. The government entities responded that they needed help from community organizations to provide education and outreach, support testing efforts, and encourage people to get vaccinated. They had no way to obtain information for specific ethnic groups within any racial community because they did not have disaggregated data for the local level. This was important to note because the government entities needed community organizations who knew the languages to prioritize the education and outreach materials. At the same time, the Hmong populations were experiencing the loss of great leaders in their community. Two prominent Hmong American women died of COVID-19—Marny Xiong (age 31), chair of the Saint Paul School Board, and Kao Ly Ilean Her (age 52), a regent with the University of Minnesota Board of Regents.23,24
Despite the broad diversity within the Asian American community, Minnesota's local agencies that collect population data combine data on all Asian Americans into 1 monolithic community. Although Asian Minnesotans comprise about 5% of the population, they represented 6% of all COVID-19 hospitalizations and 8% of COVID-19 intensive care unit cases. 22 With COVID-19 infection and mortality data available to the public only as cumulative data or semiaggregated data, CAAL was missing the necessary disaggregated data needed to acknowledge the health disparities impacting different ethnic groups within the Asian community in Minnesota.
To respond to this critical need for disaggregated data for Minnesota's Asian American community, CAAL partnered with the University of Minnesota and the Hmong Public Health Association to produce a report analyzing data from the Minnesota Death Registry Database on Hmong, Karen, and Karenni deaths caused by COVID-19 between March 2020 and December 2020. The report, A Race to Close the Disproportionate COVID-19 Death Rates in Minnesota's Asian Community, 25 was released in April 2021 and illuminated the following findings:
Data on COVID-19 deaths in the Asian community in Minnesota, disaggregated by ethnic groups, showed that 110 of the 223 (49%) COVID-19 deaths were from the Hmong community.
In 2020, 81% of the excess mortality rate in the Hmong community was due to COVID-19. Excess mortality is the difference between the total number of deaths of all causes in 2020 and the number of deaths in previous years in the Hmong community.
While other infectious and chronic diseases continued to impact the health and lives of Minnesotans, COVID-19 was the leading cause of death in Hmong, Karen, and Karenni communities in 2020 at 29%, compared with 11% in White Minnesotans.
Disaggregating the data revealed that the Hmong, Karen, and Karenni were more impacted by COVID-19 than other Asian ethnic groups. 25 These findings highlight the need for further disaggregated data to help develop more culturally relevant and targeted strategies to reduce racial and ethnic COVID-19 health disparities. Understanding such disparities enables decisionmakers to prioritize in policy and practice those who are most impacted and/or vulnerable, which can be lifesaving during an emergency response.
After the report was released, CAAL worked with news outlets to bring attention to their findings and recommendations and further establish CAAL's expertise on health equity and data disaggregation in the health sphere and with local leaders. Throughout fall 2021 and spring 2022, CAAL worked with MDH to help shape and advance the department's proposed data standard, which MDH is piloting for ethnicity, sexual orientation, gender identity, and disability data disaggregation. In response to the advocacy of CAAL and other organizations, MDH began a process to invite community feedback on this forthcoming data standard. This effort was not CAAL's first experience advocating for data disaggregation. In 2016, CAAL built expertise in the implementation of data disaggregation from their advocacy for the All Kids Count Act, 26 which led to further data disaggregation in K-12 schools. CAAL brought its perspective and experience from working with the Minnesota Department of Education to MDH's data disaggregation efforts. This expertise continues to help CAAL create interagency connections and has enabled progress on a systems level while also resulting in immediate downstream efforts, including vaccine promotion with Hmong, Karen, and Karenni communities, which was critical during the COVID-19 pandemic.
Previous reliance on the monolithic category of “Asian” created inaccurate assumptions, untargeted responses, and generalizations about the true impact of COVID-19. 27 Asian Americans can trace their lineage to over 50 countries and speak more than 100 different languages. 28 This broad diversity results in marked differences between education, English language fluency, economic class, and immigration status, which directly impact access to health insurance. Use of and access to disaggregated data would contribute to more targeted responses and better examination of issues that contribute to preventable deaths during the COVID-19 pandemic and future emergency responses. 29
Moving Forward
Public health data collection and surveillance systems should include disaggregated demographic information within racial and ethnic groups and collect information about sexual orientation and gender identity to prepare for and ensure an equitable, tailored response to public health emergencies. This includes creating materials in multiple languages and promoting practices that respect and honor diverse cultures. By disaggregating data, more accurate information will be available and existing inequities within groups may be illuminated.29,30
The partnerships OBC developed with other Boulder County nonprofit organizations, which have intersectional overlap in people but not in programming, provided significant mutual learning opportunities and benefits. Collaborating with public and community health systems at county and state levels was a pivotal component of ensuring LGBTQ+ communities were reached and served effectively from a public health and recovery support standpoint. As a result of the COVID-19 pandemic, OBC became a strong voice for health equity and meaningful data collection on sexual orientation and gender identity. Now that a state bill has been passed,17,18 future data collection efforts will ensure the LGTBQ+ populations are seen and heard when priorities are set.
Similarly, using the larger category of “Asian” created inaccurate assumptions, untargeted responses, and generalizations about the true impact of COVID-19. 27 The Minnesota case study shows that disaggregated data can be strategically used to analyze the burden of disease in specific racial, ethnic, and cultural communities and provide evidence for targeted resource allocation. The availability and accuracy of disaggregated data contributes to better-equipped public health preparedness and response plans as well as more precise examination of issues that contribute to preventable deaths. 30
Conclusion
The COVID-19 pandemic exposed shortcomings in the US public health data infrastructure, which provided a unique opportunity to create a more equitable data infrastructure that can help save and improve lives. These case studies describe the need for disaggregated data to help CBOs analyze inequities among underresourced populations or those most in need. With recognition of how critical these data are for the future health of communities, both during emergency responses and otherwise, there is a shared consensus that refinements in key demographic data must be a priority for health departments, public health agencies, and leading CBOs. This will enable CBOs to work collaboratively with other local partners to ensure data surveillance systems are in place with the necessary level of sensitivity to prioritize resources, programs, and policies.
Footnotes
Acknowledgments
CDC Foundation would like to acknowledge the following supporters of the CDC Foundation's COVID-19 response: Anthem Foundation, Google.org, Meta, National Football League Foundation, Prologis Inc., Robert Wood Johnson Foundation, Truist Foundation, and other CDC Foundation donors. The work featured in this article is supported by 
and the Robert Wood Johnson Foundation. CAAL would like to acknowledge the Hmong Public Health Association. Out Boulder County would like to acknowledge the following partners: Boulder County Public Health, Unwoven Collective, Godot Communications, CDC Foundation, Together We Protect, Boulder County, City of Boulder, City of Longmont, Colorado Department of Public Health and Environment, El Centro AMISTAD, and Center for People with Disabilities.