The poll didn’t investigate the causes for this distrust, but one factor looms large. When frantic citizens wanted answers, a non-centralized, disjointed public health data infrastructure too often created confusion, opening the door for data gaps to be filled with misinformation.
“We’re still operating on a largely 19th-century system,” Michael Kurilla, director of the Division of Clinical Innovation at the National Institutes of Health’s National Center for Advancing Translational Science, told the Washington Post. “There are systems where things are done on paper, some information is being faxed, so it’s being transcribed.”
A $65 billion pandemic preparedness initiative from the Biden administration includes investment in “public health digital infrastructure.” Exactly how much Congress will provide to get this initiative off the ground is still being debated, but a group of key public health stakeholders has asked for at least $250 million in fiscal year 2022 for the Centers for Disease Control and Prevention’s Data Modernization Initiative.
As the push to improve public health data intensifies, RWJF has released recommendations from a commission it created to consider how public health data systems can do a better job of preventing the health inequities laid bare by the pandemic. It also announced $50 million in grantmaking to help make this possible.
The National Commission to Transform Public Health Data Systems is led by Gail Christopher, executive director of the National Collaborative for Health Equity (NCHE), and supported by a research team at the RAND Corporation. Members include experts from the National Academies of Sciences, Rutgers, Howard University, Harvard Medical School, the Seattle Indian Health Board, the UCLA Fielding School of Public Health and Google.
“The cost of health disparities and inequities pre-COVID could be measured in trillions,” says Christopher. The disproportionate impact of the pandemic on minority communities, including reduced lifespans, is causing costs to the health-care system and to the nation to grow exponentially, she says.
“If we’re going to be responsible public-sector leaders, we have to understand that addressing these inequities is a primary responsibility.”
Minority groups have been much more likely to experience the worst effects of the pandemic.
Racism and Public Health
The Black Lives Matter protests that erupted following the murder of George Floyd, the largest such movement in the country’s history, weren’t seen as a cry for better public health. But the circumstances underlying this social crisis have also led to disproportionate suffering during the pandemic.
Crowded or unstable living conditions, food insecurity, higher rates of underlying conditions such as diabetes and heart disease and economic stresses, among other things, have made COVID-19 more dangerous for Black and Hispanic citizens. This has been reflected in rates of hospitalization and death that are two to three times greater than for white Americans (see chart above).
“Inequality leads to a whole range of poor health outcomes,” says Georges Benjamin, executive director of the American Public Health Association. Most of what makes a person healthy occurs outside a doctor’s office, and inadequate housing, poor environmental conditions, income inequality, lack of access to health care and discrimination all take a toll.
“Public health is about policy, and to the extent that we’ve had inadequate policies that have contributed to these poor outcomes, racism is a public health problem,” he says.
More than 220 jurisdictions and health departments have made formal declarations that racism is a public health crisis. “This has never happened before in the history of our country,” says Christopher.
The most recent declaration came this week, in the form of a resolution by the New York City Board of Health. “The COVID-19 pandemic magnified inequities, leading to suffering disproportionately borne by communities of color in our city and across our nation,” said Health Commissioner Dr. Dave A. Chokshi in announcing the resolution. “But these inequities are not inevitable.”
Events of the past year have pushed awareness of the social determinants of health well beyond the public health community. “We have to step into the moment,” says Christopher. “We have to step into it with a great deal of clarity and with a great deal of zeal and get people to understand that we didn’t have to be as sick as we were if we understood how all these factors make us healthy or ill.”
Redefining Health
The recommendations from the RWJF commission include guidelines for developing an “equity-centered” data system that includes metrics that account for social factors that have an impact on health.
“We need to make sure that we’re collecting information and moving it into the hands of decision-makers quickly and accurately,” says Christopher. “We also have to continue to educate the public to understand how to connect the dots.”
Refining what is most relevant and developing the ability to track it in real time will involve engagement with the communities that are most affected by social stresses and with private-sector partners with expertise in data technologies. Tools such as GIS mapping, data visualization software and data dashboards, pushed into greater prominence and sophistication during the pandemic, have potential to make data understandable and transparent.
Beyond detecting vulnerability to disease, an expanded data set can help public health professionals foster well-being in their communities, a priority the commission underscores throughout its recommendations.
“When we talk about public health and societal health, it is so much more than the absence of disease,” says Christopher. “It has to do with thriving, it has to do with capacity for well-being — it has to do with the viability of our democracy, for that matter.”
