By Jazmin Orozco Rodriguez for KFF Health News.
Broadcast version by Roz Brown for New Mexico News Connection reporting for the KFF Health News-Public News Service Collaboration

It's not easy to make public health decisions without access to good data. And epidemiologists and public health workers for Native American communities say they're often in the dark because state and federal agencies restrict their access to the latest numbers.

The 2010 reauthorization of the Indian Health Care Improvement Act gave tribal epidemiology centers public health authority and requires the federal Department of Health and Human Services to grant them access to and use of data and other protected health information that's regularly distributed to state and local officials. But tribal epidemiology center workers have told government investigators that's not often the case.

By July 2020, American Indians and Alaskan Natives had a covid-19 infection rate 31/2 times that of non-Hispanic whites. Problems accessing data predated the pandemic, but the alarming infection and death rates in Native American communities underscored the importance of making data-sharing easier so tribal health leaders and epidemiologists have the information they need to make lifesaving decisions.

Tribal health officials have repeatedly said data denials impeded their responses to disease outbreaks, including slowing contact tracing during the pandemic and an ongoing syphilis outbreak in the Midwest and Southwest.

"We're being blinded," said Meghan Curry O'Connell, the chief public health officer for the Great Plains Tribal Leaders' Health Board and a citizen of the Cherokee Nation. The sharing of data has improved somewhat in recent years, she said, but not enough.

Federal investigators and tribal epidemiologists have documented a litany of obstacles keeping state and federal public health information from tribes, including confusion about data-sharing policies, inconsistent processes for requesting information, data that's of poor quality or outdated, and strict privacy rules for sensitive data on health issues like HIV and substance misuse.

Limiting the ability of tribes and tribal epidemiology centers to monitor and respond to public health issues makes historical health disparities difficult to address. Life expectancy among American Indians and Alaskan Natives is at least 51/2 years shorter than the national average.

Sarah Shewbrooks and her colleagues at the Great Plains Tribal Epidemiology Center are among those who've found themselves blinded by bureaucratic walls. Shewbrooks said the data dearth was particularly evident during the covid pandemic, when her team couldn't access public health data available to other public health workers in state and local agencies. Her team was forced to manually record positive cases and deaths in the 311 counties of North Dakota, South Dakota, Nebraska, and Iowa - the region the center serves.

Shewbrooks, director of the center's data-coordinating unit and its lead epidemiologist, estimates staffers spent more than a year's worth of their time during the pandemic scraping together their own datasets to steer information to tribal leaders making decisions about closing down reservations and asking residents to isolate at home.

She said the process was frustrating and stressful, especially since it robbed her team of hours they could've spent trying to save lives in the communities they serve. The tribes in their region were doing "incredible things," she said, by providing food and shelter for people who needed to quarantine.

"But they were having to do it all without being given real-time understanding of what's going on around them," Shewbrooks said.

Contact tracers who work for state governments cover Native American populations, but it's important to have people from within the community take the lead, Shewbrooks said. Tribal workers are better equipped to move around within their communities and meet people where they are.

Shewbrooks said state contact tracers relied on calling and texting patients, which is often not the most effective method. Tribal members can be a hard-to-reach community for state workers whose protocol is to move on to the next case if they don't get a response.

"So many cases were just getting closed," Shewbrooks said.

In 2022, the Government Accountability Office published a report that confirmed concerns raised by tribal health officials, including at the Great Plains tribal epidemiology center. Federal investigators found that health officials working to address public health issues in Native American communities dealt with federal agencies lacking clear processes, policies, and guidelines for sharing data with tribal officials.

In one example, officials said that as of November 2021, 10 of the 12 tribal epidemiology centers in the U.S. had access to Centers for Disease Control and Prevention covid data, but not all had full data. Some centers had access to case surveillance data that included information on positive cases, hospitalizations, and deaths. Only half said they also had access to covid vaccination data from HHS.

The GAO report also found that staffers responding to data requests at HHS, the CDC, and the Indian Health Service did not consistently recognize tribal epidemiology centers as public health authorities. Center officials told federal investigators that they'd sometimes been asked to request data they needed as outside researchers or through the Freedom of Information Act.

The report recommended agencies make several corrections, including responding to tribal epidemiology centers as required by law and clarifying how agency staffers should handle requests from epidemiology centers.

HHS officials agreed with all the recommendations. The agency consulted with tribal leaders in fall 2022 and, this year, published a draft policy that clarifies what data centers can access.

Some tribal leaders say the proposal is a step in the right direction but is incomplete. Jim Roberts, senior executive liaison in intergovernmental affairs at the Alaska Native Tribal Health Consortium, a nonprofit organization that provides care and advocacy for Alaskan tribes, said the GAO report focused on tribal epidemiology centers, which operate separately from tribal governments, each serving dozens of tribes divided into regions. The report left out tribes, which he said have a right to their data as sovereign nations.

HHS officials declined an interview request, but Samira Burns, principal deputy assistant secretary for public affairs, said the agency is reviewing feedback and recommendations it received from tribal leaders during consultation on the draft policy and will continue to consult with tribes before it's finalized.

Stronger federal policy on tribal data sharing would help with relationships with states, too, Roberts said. Tribal officials say problems they've experienced at the federal level are often worse in states, where laws might not recognize tribes or tribal epidemiology centers as authorities that can receive data.

At the Northwest Tribal Epidemiology Center, which works on behalf of tribes in Washington, Oregon, and Idaho, forging a data-use agreement with state governments in Washington and Oregon before the pandemic helped their response by providing immediate access to near real-time data on emergency room and other health care facility visits. The center's staff used this data to monitor for suspected covid-related visits that could be shared with tribal leaders.

It took seven months for the center to get access to covid surveillance data from the CDC, said Sujata Joshi, director of the Northwest center's Improving Data and Enhancing Access project, and about nine months for HHS vaccination data after vaccinations became available. Even after getting the information, she said, there were concerns about its quality.


Jazmin Orozco Rodriguez wrote this story for KFF Health News.


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By Ramona Schindelheim for WorkingNation.
Broadcast version by Isobel Charle for Oregon News Service reporting for the WorkingNation-Public News Service Collaboration

From a translator helping a neighbor navigate health services or locate a food bank, a doula assisting a mother during childbirth, or a former inmate working with people exiting prison to reach healthier outcomes, community health workers have a wide range of roles.

They are frontline public health workers who usually live in the communities they serve and include volunteers. Research shows they have positive impacts by helping people access preventive care resulting in things like an increase in cancer screenings and reducing the risk of cardiovascular disease.

Community health workers (CHWs), also called promotores in Spanish-speaking communities, have existed for generations and have largely been under the radar. But their importance was thrust into the spotlight when COVID hit, sparking growing efforts to bring more structure to their workforce and ensure their jobs are sustainable.

Community Health Workers: Trusted Voices

"Because of the pandemic, there was the awareness that a lot of people didn't have trusted information. There are a lot of barriers for communities and accessing health care resources and getting trusted information, specifically looking at Black, Brown, Indigenous communities, immigrant, refugee communities," explains Jennine Smart, executive director, Oregon Community Health Workers Association.

"Being able to have a workforce that's already connected in community-based space to provide reliable, trusted, and honest information has been pivotal.

"It really amplified the recognition of this workforce and the value that CHWs bring more broadly to communities and really serving as a liaison and a bridge between health settings, health systems, and communities," adds Smart.

Those settings can include hospitals, clinics and community organizations. And CHWs are in demand.

The Bureau of Labor Statistics counts 63,400 CHWs in the United States, although that may be an undercount since there are different job titles for CHWs, especially in community health organizations.

It's estimated that jobs for CHWs will grow 13% between 2023 and 2033.

The median salary is $48,200, according to the BLS , with a high school diploma or equivalent required.

Empowering Through Technology

Among the latest efforts to create sustainable jobs for CHWs is the work of Pear Suite, a digital health company launched in 2021.

I spoke with the co-founder and CEO Colby Takeda at CES 2025 in January.

"Our company is all about empowering them, supporting them with technology, with software system that allows them to document all their activities, track the needs of individuals, track how they're getting support, whether it's through organizations or health care system or social services," says Takeda, who has personal experience with caregiver support as well as the nonprofit sector.

The company counts more than 175 partners in community-based organizations and health care companies and says it's had an impact on more than 100,000 lives.

Takeda explains the Pear Suite is providing accessible training in different languages to convert a community health worker's lived experience and help them with credentials and certifications since there is no standardization process across the country.

States have their own certification process and reimbursement process. Grants had funded much of this work, but 29 states now allow services by CHW to be reimbursed by Medicaid, according to a 2022 KFF survey.

Pear Suite, says Takeda, is helping CHWs utilize their technology to track their work. "It's really infrastructure for them to get more revenue, whether it's through reimbursement, through the new Medicaid or Medicare policies that allow for community health workers to now get paid or for them to secure more funding through grants with better data," stresses Takeda.

And it comes with hurdles.

"These organizations and these workers have been on paper and spreadsheets for many years. For them to transition to now a system for them to document and do claims and maintain compliance with health plans has been really challenging," he adds.

Takeda explains that the company provides wraparound support teams to better understand contracts with health plans and things like compliance and how to do claims.

The result, he says, is that community based organizations that can range from a small community center to a barbershop now have a formal structure.

"These are people that are providing screenings or resources to early young mothers to individuals who are facing homelessness or health sickness. These are organizations that have been doing this work for decades but never got paid by the health care system. We're now helping them get paid sometimes the average of $15,000 a month additional, which is huge for them," says Takeda.

Using Skills From Lived Experiences for a Living

One community health worker who credits Takeda's technology with helping his work become more sustainable is Joe Calderon, a former inmate who served 17 years in prison who has made it his mission to build better outcomes for people in his California community while supporting his family.

"Now I can change my life, my family's life, and my community's life, by slowly making a little bit more money by creating my own organization" says Calderon, a manager of recruiting and training for Urban Alchemy, based in San Francisco with a mission to "heal neighborhoods by employing the unique talents of returning citizens to transform communities and spaces."

Calderon has a Community Health Worker certificate from San Francisco City College and started out as a community health worker after exiting prison.

"I found my voice for advocacy as I watched so many men die in prison of treatable diseases," he explains. And he says it made him think more about health care when he had to take medicine for high blood pressure at the age of 29years old while behind bars. It's his lived experience that has spurred him to change outcomes of the communities he knows.

"No one ever taught me to go to the doctor. I already knew, when I started to see about health care, that the communities that I came from, in my perspective, took better care of our cars. Our cars had tinted windows, rims and beat. But nobody was talking about going to the dentist. Nobody was talking about going to the doctor regularly," adds Calderon.

Building a Sustainable Workforce

On a wider scale, Oregon, where a statewide professional workforce association for community health workers was established in 2011 and has an 80 training requirement for CHWs is aiming to take its new partnership with Pear Suite to a new level.

"We really want to support the sustainability of the workforce, right, and that we don't want to just get everybody trained as a CHW. We want to make sure that folks are able to be employed, and that we have a sustainable workforce," explains the Oregon Community Health Workers Association's Jennine Smart.

To do that, Smart explains, the organization is looking to use the platform to build a network that will take over the administrative burden of billing management while at the same time creating a system to get a more comprehensive view of the work done by community health workers.

"So we're looking at building a community based organization network. And so it'd be community based organizations that are employing community health workers and providing community health worker services. And then we'd hold a contract with Medicaid" explains Smart.

In short, it would provide structure not just for billing but case management. She describes the goal as building a more comprehensive payment system that hasn't always included all the work they do in an effort to recognize the key roles CHWs play.

She adds, "Those are the folks who are out there. They're getting their feet wet. They're in the dirt, they're really doing that connected hard work that is so meaningful."


Ramona Schindelheim wrote this article for WorkingNation.

Support for this reporting was provided by Lumina Foundation.


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The Missouri Foundation for Health is partnering with The Marshall Project on the launch of a St. Louis nonprofit newsroom highlighting the legal system's effect on health, especially in marginalized communities.

The Marshall Project focuses on investigative, data-driven journalism to explain the justice system, especially to those affected by it. With the foundation's support, its St. Louis newsroom will cover topics like the death penalty, juvenile justice, health care in prison conditions and reentry challenges.

Molly Crisp, senior communications strategist at the foundation, shared the goals of the new partnership.

"We recognize that the criminal justice system disproportionately harms certain populations and that exacerbates health inequities," Crisp explained. "We're hoping through this partnership that we're bringing to light some of the issues that are rampant in the legal system and that we can address those issues."

Statistics show low-income marginalized communities face higher pollution, increasing asthma risk, along with other health problems, and incarcerated individuals often endure long waits for medical care and face barriers to mental health treatment due to staff shortages and limited resources.

Katie Moore, a reporter for the Marshall Project, said its goal is to investigate such issues both locally and statewide.

"We have been talking with different groups, individuals who are connected to the criminal justice system in some way," Moore noted. "To see what their concerns are, what they see as being missing in the media landscape in St. Louis in terms of coverage of some of these more in-depth investigative issues."

With an increasing number of older people who are incarcerated, Missouri prisons face growing health care demands, including the need for geriatric care and hospice services.

Ohioans are seeing changes in their water infrastructure as cities work to replace lead service lines, a requirement under federal regulations.

But concerns have risen over the materials being used for replacements.

Teresa McGrath, chief research officer with the group Habitable, said while lead exposure poses significant health risks, she cautions against replacing these pipes with polyvinyl chloride due to its environmental and health implications.

"It's important to get those lead pipes out. Let's prioritize that," said McGrath. "But let's not make a regrettable substitution while we do that."

PVC production involves hazardous chemicals, including vinyl chloride, a known human carcinogen. However, PVC remains a popular choice because of its lower cost and ease of installation.

Environmental health advocate Yvette Jordan - the chair emeritus of the Newark Education Workers Caucus, and a steering committee member at Lead Free NJ - underscores the importance for Ohioans to be well informed about their environments.

"What is in their home?" said Jordan. "If they have a service line, is it plastic? Copper? What exactly is it and how does that affect their health, their community, and most importantly their families and children who are most affected by this?"

McGrath highlighted specific concerns about PVC and alternative materials that could be safer.

"The best available water pipe that we have evaluated for use inside a home is copper pipes," said McGrath, "and we will be the first ones to tell you that copper pipes are not perfect, but it is the best available."




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