'We've always had the answers': Put underserved patients in the driver's seat to improve outcomes, leaders say at Health Datapalooza

ARLINGTON, Virginia—With billions of dollars pouring into healthcare every year and countless new technologies emerging, healthcare businesses in the U.S. are thriving. But health outcomes “are going in the wrong direction,” said Food and Drug Administration Commissioner Robert Califf, M.D.

During a keynote presentation at the 2022 Health Datapalooza and National Health Policy Conference, Califf highlighted life expectancy as a meaningful metric to represent other health outcomes—and life expectancy has been declining in the U.S. for the last several years.

“We’re essentially in last place among high-income countries,” Califf said. “And for this poor result, we spend a lot of money.”

But, as has long been known, mortality data are also skewed among different racial and ethnic groups. Califf noted that Hispanic and Black Americans saw far greater declines in life expectancy in 2020 compared with white Americans.

Rural residents suffer such disparities, too. A JAMA study published last June showed that the gap in death rates between rural and urban residents tripled between 1999 and 2019 driven by chronic diseases, drug abuse and suicide.

New health data paradigms could hold many opportunities for closing those gaps. In a health equity-focused panel following Califf’s keynote, J. Nwando Olayiwola, M.D., chief health equity officer and senior vice president at Humana, underlined the importance of building risk prediction models that anticipate health disparities to represent underserved populations more accurately.

“If you assume the science and technology is good enough, you’ll miss a lot of opportunities,” she said.

Abigail Echo-Hawk, chief research officer for the Seattle Indian Health Board, said the communities in question need to lead those redesigns. While many organizations across the country are tackling data reform, there’s an assumption that the categories of data collected are illustrative of the most important health patterns across communities—which, for American Indian and Alaskan Native populations, among others, Echo-Hawk said isn’t usually the case.

“It has to be data for us, by us, not just meant to 'serve' us—and I say that in quotations because that data has never served my community,” she said. “Until we get to a point that it does, I’m going to be working to justice. It has to be about justice, until all people are properly represented in the way that their communities define it, not how it’s defined by the federal government.”

For one, critical metrics within underserved communities may be entangled, leading policymakers to miss their implications.

Henry Fernandez, CEO of the African American Research Collaborative, noted that after the COVID-19 vaccine became widely available, Spanish-speaking Latinx patients expressed more vaccine hesitancy than their English-dominant counterparts, as vaccine misinformation in Spanish on Facebook and other social media platforms ran rampant and largely unchecked.

Studying larger samples of underserved communities, Fernandez said, would help unearth those stories.

Fernandez also emphasized the need for more focus on positive narratives among marginalized populations.

“We can use data to tell positive stories that reinforce these ideas—for instance, the significant success in Native American communities in vaccine uptake,” he said.


Reconciling a healthcare business’s financial performance with its responsibility to close care gaps faced by those populations will require federal directives to turn motivation into action, Califf said.

“As long as every subsystem is optimizing its own well-being, financially and in terms of the way it looks to the outside world, we are not going to serve the people who need it the most. We’ve got to figure out policy incentives that make it so it’s good business to take care of patients that are right now left out of the system,” he said.

The solutions are out there, Echo-Hawk said, especially within the communities they aim to help.

“Too often, people come to me and say, 'What do you need us to do? How can we help you?'” she said. “And my answer to that is, 'We have the answers. We’ve always had the answers. You never listened. Come to us with the resources that we need, and we will direct the efforts.'”