COVID-19 data gaps Addressing COVID-19 Data Gaps

Policymakers can play a critical role in improving and streamlining data collection that provides needed information for healthcare professionals and response teams while safeguarding individual privacy. This section explores actionable opportunities to address COVID-19 data gaps. It captures some of the key recommendations for policymakers in order to improve a federal response to future pandemics and crises. 

Rapidly adapt privacy guidelines to enable better data sharing

HHS can lead the way to clarify and, where necessary, revise privacy guidelines that now make it difficult to share data that is essential to fighting the pandemic. This would align with American attitudes, which a recent survey shows improved support for healthcare data sharing. As a first step, HHS could clarify the kinds of data sharing that are already allowed under HIPAA, which may be broader than many healthcare providers realize. Developing standard Data Use Agreements would help federal agencies exchange data with each other, with state and local governments, and with the private sector. Beyond those actions, HHS could also consider and mandate short-term or long-term changes to HIPAA and its implementation, in the same way that regulations governing telehealth have been amended rapidly to address healthcare needs during the pandemic. Participants suggested a next step could be a follow-up Roundtable, including both HHS and key stakeholders, to assess what changes are needed, and develop innovative approaches. 

Systematically assess and apply federal SDOH data for use by HHS and its partners

HHS and its partners would benefit from a deeper understanding of available sources of SDOH data within its various offices, and inside the federal government. HHS could build on its ongoing efforts to inventory and assess federal data sources, such as the U.S. Census Bureau, that can be made available at a granular enough level to be relevant to individuals and communities. By focusing on data with particular relevance to the COVID-19 pandemic, HHS could expand and accelerate its current efforts to improve the use of SDOH data overall.

Create a national public database of COVID-19 cases, deaths, and testing at the sub-census tract level

Hyper-local information is essential to making local policy decisions and is also a powerful tool for individuals making choices in their daily lives to keep themselves safe. Available platforms, presented at higher levels of aggregation, do not sufficiently inform actions at the community and neighborhood level, including decisions about reopening schools. A national public database of COVID-19 cases would help mitigate these issues. 

Develop federal incentives for state and local data collection

State and local data collection is inconsistent. Some states, like Florida, have a standard taxonomy in place but aren’t collecting data, while others lack the infrastructure or ability to collect data. The Resilient American Communities Initiative is exploring incentives and could serve as a best practice. There are also opportunities for states to work with the private sector or other actors to make better use of their data. For example, Maryland has worked with the analytics firm Socially Determined to assign risk scores to individual COVID-19 cases and tailor individual interventions. 

Introduce an enterprise emergency planning system at the federal level

The multitude of state data collection systems for disasters has inhibited the federal government’s ability to properly respond to large-scale pandemics like COVID-19. HHS and its federal partners should build on the key metrics for disaster planning and improve situational awareness through a harmonized system of data ingestion and visualization. This system could either build on or model the DHS’s Medical and Public Health Information Sharing Environment (MPHISE) system for rapid implementation and improved federal understanding of the spread of the pandemic.

Fund state and local governments for data-driven vaccine planning

The lack of trust between minority communities and the U.S. healthcare system is a persistent barrier in the delivery of adequate healthcare to these populations. Collecting data on healthcare utilization and the languages spoken in different communities could help improve outreach and the work of community-based organizations (CBOs) for target demographic groups. In addition to a general distrust of healthcare institutions, minority communities may be skeptical about the development and use of vaccines due to a history of negative experiences with medical research, including unlawful experimentation and mistreatment (e.g. the Tuskegee Syphilis Study).  The federal government should allocate funds to states and localities to support community resources and CBOs for vaccine planning to help overcome this trust barrier. This will be critical when vaccines for COVID-19 are ready for public use, and will be essential for widespread uptake. States and localities should leverage community members who already have trust within the system to help increase medical trust within the community.

Establish a public clearinghouse for SDOH data

SDOH data pertinent to vulnerable communities is spread across many different platforms and lacks standardization. A number of federal, and state entities are collecting different types of data on SDOH already. Additionally, many companies provide data on individual SDOH such as walkability scores and housing prices. A clearinghouse of publicly available data collected from all of these existing sources could help target interventions to mitigate health risks in low-income and minority communities. A warehouse would facilitate better data sharing between states, healthcare entities, and public health agencies. 

Increase publication frequency and expand access to Medicaid claims data

Roundtable participants identified a need to increase the frequency of Medicaid claims data publication and expand access to that data. Medicaid claims data can be used to identify at-risk populations and understand the prevalence of comorbidities. For example, a county health official can use claims data to see Medicaid recipients in their county and what kinds of procedures they have received. That provides a better understanding of the potential for increased COVID-19 risk. Policymakers should consider ways to provide more access to Medicaid claims data to researchers and others. 

Expand the use of the CDC’s Social Vulnerability Index (SVI)

The SVI is a well-established, concrete metric that can be overlaid with COVID-19 data to provide new insights and applications. The SVI can help align local planning and response efforts by private health systems, local health departments, community-based organizations, and social services organizations.  The CDC and its stakeholders can work to publicize the SVI and expand its use, while also gathering stakeholder input and implementing recommendations on ways to improve timeliness, granularity, or other factors that would add to its value. For example, Roundtable participants noted the need to include age-adjusted data, on a per capita basis, with information on race and ethnicity following the standards established by the White House Office of Management and Budget (OMB).

Improve COVID-19 case data and collection efforts

Nationally, the CDC started collecting data on COVID-19 cases as an initial base for tracking and analyzing the spread of COVID-19. However, gaps and inconsistencies in this data and required reporting still exist. These include missing or incomplete information on disease severity and treatment, such as hospitalization status and ICU admission, as well as an absence of important patient characteristics, including underlying health conditions, age, race, gender, and ethnicity. To mitigate these disparities, the CDC and other entities should collect data at small area geographic levels. That will provide a more comprehensive view of affected areas. They should also compile a record of best practices from those who are leading in COVID-19 case data collection.

Use SDOH data to better target local testing and contract tracing efforts

SDOH data can help local governments understand which populations may be most at risk of contracting COVID-19 and target resources appropriately. SDOH data can also help plan culturally appropriate contact tracing for impacted populations. For example, the Washington, D.C. government has used SDOH data to proactively identify potential hotspots and open testing sites in areas that most need testing capacity. The D.C. Office of Health Equity has analyzed factors like life expectancy, food insecurity, car ownership, and crime across 51 D.C. statistical neighborhoods by borrowing data and analysis from numerous offices around the federal government. Other initiatives, like the Resilient American Communities (RAC) initiative, provide toolkits and resources to enable communities to improve contact tracing efforts and testing for vulnerable populations. The RAC draws upon data from those local communities and also allows community groups to provide local insight into neighborhoods where public health officials should focus their efforts.