“You can’t improve what you don’t measure” is a common phrase highlighting the importance and power of data. Indeed, the importance of data was the central theme of the 2021 All In National Meeting.
In case you’re unfamiliar, the host of the national meeting is All In: Data for Community Health: a learning network of US-based community collaborators working to develop shared data systems, particularly focused on social determinants of health (SDoH) data. These data help participants gain insights on factors that influence community health outcomes.
Data sharing as a tool to promote health equity, community health, and racial justice was the predominant theme throughout the meeting. Below are some key takeaways from the three-day virtual event.
The influence of data on racial justice and inequities
Multiple plenary and breakout sessions discussed the use of data particular to specific populations. In an opening plenary on the first day, Dr. Rachel R. Hardeman discussed the importance of measuring and quantifying structural racism. She co-authored a 2018 systematic review on whether the term “institutionalized racism” or its synonyms (e.g., systemic) was explicitly used in the most prominent public health peer-reviewed journals from 2002-2015.
While institutionalized racism is often acknowledged as a cause of health inequities, it is rarely named in publication titles or abstracts. In fact, the 2018 review identified only “25 articles that named institutionalized racism in the title or abstract among all articles published in the public health literature…”
A recent Health Affairs article, mentioned in Dr. Hardeman’s presentation, evaluated publications from 1990-2020 and identified an increasing number of instances of this topic. However, a lack of evidence-based empirical studies remains. Dr. Hardeman stressed that “racism is a fundamental cause of health inequities,” and meaningful change requires measuring the deep impact of structural racism.
The negative impacts of data
Dr. Hardeman’s plenary also discussed the importance of community-based participatory research. In line with that theme, the second day opening plenary, given by Adrian E. Dominguez, MS, from the Urban Indian Health Institute, discussed Indigenous data sovereignty. Data sovereignty acknowledges the rights of the American Indian/Alaska Native (AI/AN) people to govern collecting, owning, and applying their data.
Since most AI/AN population data are collected and maintained by non-Indigenous entities, racial misclassification is common. Downstream effects include a lack of reliable AI/AN data, underestimates in morbidity/mortality, and, subsequently, a lack of funding. As a result, we need to decolonize data by applying Indigenous methodologies, Indigenous epidemiology, Indigenous research, and cultural rigor. Decolonizing data helps community empowerment and allows AI/AN populations to control their own stories.
Fighting COVID-19 with data
This event, like many others during the pandemic, occurred virtually. COVID-19 was an ever-present influence. Several sessions shared how data informed and guided their pandemic response:
- An effort in New Brunswick, NJ used surveys and mapping tools to confirm where those with COVID-19 were located and which residents in those areas suffer the most from health and social disparities. This information later informed the location of testing centers and vaccine clinics.
- Another session discussed the importance of data collaboratives. Fight COVID Milwaukee is a community-engaged research effort. The project involved linking large-scale antibody testing data to other healthcare data to estimate true infection rates and understand the needs of specific populations.
- Finally, the COVID-19 Research Database (a public-private consortium organized by several partner organizations) is a cross-industry collaborative that provides real-world data as a tool to better understand and combat COVID-19.
Data and social determinants of health
My final takeaway is that data can be powerful tools in identifying and addressing SDoH. Presenters from the Multicultural Health Institute collaborated with community partners to develop a survey to collect SDoH data in Newtown, a community in Sarasota, Florida. Researchers used the data to link community members with resources and explore potential solutions to address disparities. In addition, My Care Community was another initiative that used data to address SDoH through care coordination, providing referrals and connecting individuals to the services they need most.
The All In National Meeting was a valuable event that showcased the power of data on community health. Data can guide how we respond to the COVID-19 pandemic, how we plan public health interventions, and how we represent and evaluate community health.
Disclaimer: My attendance at the All In meeting was supported by an RWJF-sponsored initiative, Community Benefit Insight (CBI). CBI is a publicly available, web-based tool that provides community benefit spending data on US nonprofit hospitals. Opinions are my own and not necessarily those of All In, RWJF, CBI, or RTI International.
Alexa Ortiz