How Good Data Can Advance Health Equity

by Joyce Lee-Ibarra, JLI Consulting LLC

Research has consistently found Native Hawaiians and Pacific Islanders (NHPI) are at increased risk of a range of preexisting and underlying health inequities, which in turn places members of these communities at increased risk of infection and severe illness from COVID-19. During the current pandemic, the disproportionality of the disease’s impact distills the health inequities borne by our state’s Pacific Islander community: currently, 30 percent of confirmed COVID-19 cases are among non-Native Hawaiian Pacific Islanders, although they constitute only 4 percent of Hawaii’s population. Recent media coverage suggests, despite recognizing Pacific Islanders’ heightened health risks for the disease, Hawaii state health officials were unprepared to adequately address the needs of this institutionally underserved community during the pandemic.

How can Hawaii better serve the health needs of Pacific Islander communities, particularly as the state wrestles with the impacts of COVID-19? Good data can certainly be part of the solution. What might “good data” mean, in this context? We offer a few suggestions.

Clear, consistent, transparent reporting on COVID-19 data

Hawaii could learn from the example of the Los Angeles County Department of Public Health (LACDPH), which released a “COVID-19 Racial, Ethnic & Socioeconomic Data and Strategies Report” in the early months of the pandemic. The report detailed data on confirmed cases, deaths, COVID-19 testing, and test requests by race/ethnicity and socioeconomic status; hospitalizations are also broken down by race/ethnicity. Socioeconomic status was approximated by area poverty for the census tracts where the home addresses of confirmed cases were located. Similar information could be captured and reported for Hawaii’s COVID-19 related deaths, hospitalizations, testing, and testing requests, and would assist the public and decision makers in tracking the disease’s progression while also identifying communities where needs and allocation of resources are most urgent.

Data from LACDPH tracks COVID-19 test requests by race/ethnicity, and tracks their proportionality with racial/ethnic groups’ representation of the total population.

We have discussed previously the critical importance of disaggregated data in identifying the specific needs or issues facing subgroup populations. Hawaii has been criticized in recent months for its limited public data related to COVID-19; its disaggregated data is likewise limited.  For example, race/ethnicity is reported for confirmed cases and deaths, but not for testing or hospitalizations. The state also does not provide information on socioeconomic categories in its reporting, although socioeconomic status is highly correlated with disparate health outcomes. At a bare minimum, collecting and publicly reporting race/ethnicity, age, zip code, and socioeconomic status of the confirmed cases would provide valuable understanding about the communities and people being most affected by the disease, and help to tease out subgroup nuances.

Culturally relevant measures, as determined by the communities most impacted by COVID-19

In many cases, metrics to assess health equity are simply deeper dives on data that would ideally be routinely collected and analyzed by health officials. For example, few would argue that publicly available data regarding the training, hiring, deployment, caseload, and responsiveness of contact tracers was critical information for the state to track, particularly in the early months of the pandemic; controversy has arisen, in fact, about the state’s shortcomings in this area. Capturing and publicly reporting culturally relevant dimensions of contact tracing data — such as the percentage of contact tracers who are bilingual in languages such as Marshallese, Samoan, Tongan, and Chuukese, or the percentage of contact tracing teams that include Pacific Islander community health workers — would grow our collective understanding of outreach and public health gaps for these communities, and allow us to track progress in these areas over time.

How might such culturally relevant measures be identified? Easily — by asking for the input and guidance of leaders from the most impacted communities. In fact, leaders from the Native Hawaiian & Pacific Islander Hawaii COVID-19 Response, Recovery, and Resilience (NHPI 3R) Team recently published a document outlining their communities’ priority issues, including contact tracing, personal protective equipment, housing and financial support to assist with quarantining, and outreach; corresponding metrics to track progress on these priorities could follow directly from such a document. Unfortunately, these same NHPI community leaders have expressed frustration with a perceived lack of health officials’ responsiveness to their concerns regarding the pandemic. Working in partnership with leaders of impacted communities, and being open to their guidance in determining which measures are important in their communities, can provide inroads to better health equity.

Inclusive Data Collection and Analysis Regarding Highly Impacted Communities

Translation is critical to ensuring public health messaging reaches impacted communities. Above, information regarding masks and social distancing have been translated to Samoan.

Established relationships with community leaders, nonprofits, and community thought partners are fundamental to any jurisdiction’s successful effort to collect and analyze data. When trusted connections pre-date a crisis, assistance is easy to activate and mobilize on short notice; this is certainly the case among institutionally marginalized communities, who might otherwise display a wariness in engaging with government efforts to “collect data.” Similarly, culturally appropriate messaging and translation of materials can help ensure critical information that impacts data collection and reporting are being accurately transmitted.

Community advisory groups are a useful way of structuring inclusive two-way dialogue between government and community entities, and ensuring that disagreements regarding what data will be collected, through what processes, can be collaboratively decided. Regular gatherings can facilitate timely feedback, identify concerns early, prevent and address misinformation, and inform jointly-developed emergency response strategies. King County, Washington, provides a model for such convenings through their Pandemic Community Advisory Group. The group comprises representatives from community, business, and government sectors. Even beyond the immediate crisis, such gatherings provide a vehicle for open exchange and community-informed discussion of upstream factors that inform public health data analysis, such as access to care, underlying conditions that increase vulnerability, and social determinants of health such as income, employment status, and education.

Ultimately, good data – in partnership with communities and in service to people – is vital to advancing health equity and ensuring health measures integrate and reflect priorities of those most impacted by adverse health outcomes. As Hawaii looks to address inequities highlighted by COVID-19, we can hopefully learn broader, more global lessons about data’s applications in achieving more equitable health and well-being across the state.

Joyce Lee-Ibarra is principal of JLI Consulting LLC and a consultant to the Hawaii Data Collaborative.