Open data: A critical tool for the new administration’s COVID-19 strategy

Written by Matt Rumsey and Temilola Afolabi
DEC 16, 2020 | FEDSCOOP

The Biden administration has emphasized their commitment to creating a robust strategy to fight COVID-19, by strengthening the federal role in addressing the pandemic, prioritizing scientific analysis,  and ensuring equitable distribution of vaccines and treatments. For the administration’s plan to be successful, they will require robust data on testing availability, tracking of COVID-19 cases, clinical care and outcomes, and the social determinants of health (SDOH) that have a major impact on COVID risk.

The SDOH, defined as the conditions in which people are born, grow, live, work and age that shape their health, are now recognized as a critical aspect of the pandemic. These social determinants may largely determine how the disease is contracted, testing availability in different areas, and the ability to access adequate care across communities. They are also key to understanding and reducing the high risk of COVID-19 in minority and low-income communities.

State and local health departments, healthcare institutions, academics, and others face significant challenges as they leverage SDOH data to predict and manage COVID-19 risk in the populations they serve. The obstacles include inadequate data on the SDOH and the spread of COVID-19, a lack of technical infrastructure to put the results of analysis into action, and concerns around privacy that make it difficult to share information and engage the general public.

A new report from the Center for Open Data Enterprise (CODE) — a Washington-based nonprofit that promotes the public use of open and shared data  — recommends ways to improve SDOH data to fight the pandemic. The report drew insights from an August 2020 Roundtable on Using Social Determinants of Health Data to Fight COVID-19 and Support Recovery Efforts co-hosted by CODE and the HHS Office of the Chief Technology Officer (CTO). The roundtable explored the challenges standing in the way of fully leveraging SDOH data to fight the pandemic, and identified rapid opportunities to use social factors to predict and address the impact of COVID-19 at a national, state, and local level. The report’s key recommendations are to:

1. Establish a public clearinghouse for SDOH data. SDOH data pertinent to vulnerable communities is spread across different platforms and isn’t standardized. A clearinghouse of publicly available data could be used to target interventions to mitigate health risks in low-income and minority communities.
2. Systematically assess and apply SDOH data from across federal agencies for use in and outside of government. Efforts are already underway to inventory and assess adequate data sources, and could be accelerated by focusing on data with particular relevance to the COVID-19 pandemic and SDOH. Federal agencies with relevant data include the Census Bureau, the Department of Housing and Urban Development, and the Agency for Healthcare Research and Quality.
3. Reassess privacy guidelines and data use agreements to expedite SDOH data sharing. HHS can help clarify or even revise privacy policies that make it difficult to share data that is essential to fighting the pandemic. HHS can also develop standard data use agreements for sharing privacy-protected data safely and appropriately.
4. Use SDOH data to better target local testing and contact tracing efforts. SDOH data can be used to help local governments understand which populations may be most at risk of contracting COVID-19 and target resources including testing sites and contact tracing.
5. Improve and expand the use of the CDC’s Social Vulnerability Index (SVI). The U.S. Centers for Disease Control and Prevention (CDC) and its stakeholders can collaborate to further publicize the SVI, gather stakeholder input, and develop recommendations to improve its timeliness, granularity, and value overall.
6. Create a community of practice so that localities can share innovative policy ideas and leverage existing ones. Live convenings, communications programs, or an online platform spearheaded by HHS — and developed collaboratively with local health departments — could enable local leaders to exchange ideas and learn from each other.
7. Develop an “Open Table” approach to connect individuals with social programs and services. Apps and other tools to connect people with social services can provide a way to act on SDOH data by directly helping people in need.

The COVID-19 pandemic may be the most significant national and global health crisis in more than a generation. It has also exposed the profound ways in which social factors impact health and well-being. The data that we collect about these social factors can play a powerful role in our response to the COVID-19 pandemic and future crises. Some data-driven solutions can be developed in a short time frame with limited resources, while others may take months or years to be fully realized. But we have to start now to ask the right questions, build proactive partnerships, and take action to use data to mitigate the ongoing damage done by COVID-19.