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about data-sharing policies, inconsistent processes for requesting information, data that's of poor quality or outdated, and strict privacy rules for sensitive data on health issues like HIV and substance misuse.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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Holiday travel is in full swing and for many, so is the stress. The American Heart Association of Missouri has health tips for anyone with heart disease or other chronic health conditions.

Medical professionals emphasized holiday travel requires planning. They suggested starting with a checklist: Consult your doctor, stock up on medications and prepare any medical equipment.

Dr. Georges Chahoud, cardiologist with SSM Health and board president for the American Heart Association-Metro St. Louis, offered advice for travelers with pacemakers and similar devices.

"If they are traveling, especially on an airplane, they have to make sure that they have enough time because they have to go through a special security check, since they have those devices," Chahoud explained. "It's recommended that they don't go through the metal detector; they can be 'wanded.'"

The American Heart Association also noted flights over four hours increase blood clot risk, so wearing compression socks is recommended. Research shows 6% to 7% of travelers deal with some kind of illness during or after their trips.

In a Heart Association survey, 69% of respondents said they struggle with eating healthily during the holiday season.

Chahoud, who is regional director of the Heart Failure Clinical program at SSM Health-St. Louis and Southern Illinois, and director of Cardiology Services at SSM Health-St. Joseph Hospital in Lake St. Louis, emphasized the problem can be exacerbated if you are traveling.

"They may indulge more in alcohol use, which can induce some heart problems, especially with irregular heart rhythm and A-fib," Chahoud pointed out. "Diet is quite important for patients with heart failure, especially as it pertains to those patients that don't watch the salt in their food."

He stressed the importance of seeking immediate medical attention if you experience symptoms of heart issues, such as chest pain or shortness of breath. Check for medical facilities available at your destination and know your health insurance coverage.

Maryland is facing a significant shortage of behavioral health professionals and a new report from the Maryland Health Care Commission offered some suggestions to fix the problem.

All but two counties in Maryland are labeled as a partial or complete mental health shortage area. Years of underinvestment and high rates of burnout for behavioral health specialists has caught up with the state. The report found a 50% shortage in the number of professionals needed to adequately care for Maryland's population.

Tiara Fennell, assistant clinical professor and clinic director of the Center for Healthy Families at the University of Maryland-College Park, said behavioral health professionals have long been undervalued, which can lead to burnout. The COVID-19 pandemic, she added, is also partly to blame.

"A lot of it has nothing to do with their intent or their desire to help people," Fennell explained. "It's because of their desire to want to be able to take care of themselves. One of the major things that is a deterrent is people not getting paid enough."

The report showed 45% of behavioral health professionals currently working in Maryland are expected to either retire, leave the state or exit the profession in the next five years.

To tackle the shortage, the Maryland General Assembly passed a Behavioral Health Workforce Investment Fund in 2023 and commissioned a report on how to spend the money. The report recommended focusing on investments in behavioral health. It suggested implementing more "earn while you learn" programs, with paid apprenticeships, fellowships and stipends to lessen the costs of college. More flexible schedules and mentorship programs were also recommended to address the nonfinancial issues of burnout.

Fennell pointed out many behavioral health internships are unpaid and she believes efforts to increase pay and reduce work loads for these professionals will boost recruitment and retention.

"That would make a huge difference getting people interested in this type of work," Fennell contended. "Also, maintaining that workforce -- and having people want to be there long-term, and spend the majority of their employment history -- however long that will be, working in this space."

The Behavioral Health Workforce Investment Fund will allocate more than $148 million over the next five years.


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The excitement of the holiday season is celebrated with family get-togethers. But for Alzheimer's patients, large groups can produce fear and confusion. The disease causes brain cell deterioration and the ability to rapidly process information diminishes daily.

Macie P. Smith, a licensed social worker and gerontologist, advised paying attention to nonverbal cues when a patient appears agitated.

"If you're going to have a small, intimate gathering, I also recommend doing name tags," Smith suggested. "Go ahead and put the person's name and the relationship to the person on the shirt, so that way they won't have to guess and wonder and try to figure out who this person is. It just helps with the ease of engagement."

Reminiscing over the family photo album is a traditional holiday favorite. Despite the best intentions, Smith explained, asking an Alzheimer's patient to identify a relative can be frustrating. The questions cause them to use brain cells that are severely impacted and could produce combativeness and aggression. She recommended singing or playing music as better choices.

The Alzheimer's Association Illinois chapter reported 311,000 caregivers cook meals, assist with basic hygiene and monitor medication intake. The needs of patients are unpredictable, leaving them with sporadic break times.

Additional stress from gift shopping and work obligations underlines the importance for a caregiver to routinely nurture their physical and mental well-being. Smith advised using a calendar for scheduling enjoyable activities.

"I've asked caregivers, 'So, what do you like to do?' They don't know, or they don't remember, because they have been so engulfed with caring for someone else and depleting everything that they've had, they've lost a sense of self," Smith observed.

For unmanageable situations, Smith recommends contacting a professional respite care service through your local department on aging. The agencies offer vouchers to pay a certified person to sit with your loved one. Another choice is asking for help from a church member, trusted neighbor or a Medicare or Medicaid-funded adult day service.


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