The Urban Indian Health Institute in Seattle is one of 12 tribal epidemiology centers across the U.S. tasked with informing health policy in Native American communities – based largely on data collected by states and the federal government. Incomplete or missing data makes strategic decisions about where and how to focus resources more difficult, especially amid the pandemic, said Stacy Bohlen, CEO of the National Indian Health Board. “If you can’t measure it, you can’t manage it,” Bohlen said. “You don’t know the incidents and prevalence, you don’t know how to provide the right number of physicians, the right number of ventilators.” Vanesscia Cresci, interim director of the California Tribal Epidemiology Center, said her organization has had difficulties accessing federal health data in the past. She noted that California is home to 109 federally recognized tribes, so it’s important tribal health officials can analyze data in ways unique to them. “(It) allows us to tell our own story of how COVID is impacting California tribal communities,” Cresci said. As part of the Affordable Care Act in 2010, Congress reauthorized the Indian Health Care Improvement Act, which established tribal epidemiology centers as public health authorities independent of tribal governments. That means they maintain the same legal rights to federal data as do states or counties. A 2015 CDC document reaffirmed that these centers are public health authorities and explicitly stated they are entitled even to protected health information. But both Echo-Hawk and Bohlen said the CDC has consistently withheld data from the centers, citing federal health privacy laws. “So they wrote a brief that says we should have access to the data, but they have yet to operationalize that,” Echo-Hawk said. “It seems like it’s a rather paternalistic approach to tribal nations and to tribal epicenters to cite HIPAA as a reason,” Bohlen said.
Did you know that tribes don't have access to the same #COVID19 data as states? H.R.7948, the Tribal Health Data Improvement Act, fixes the situation. The bipartisan bill is set to pass the House of Representatives on Tuesday. #Coronavirus #116th https://t.co/uUkmr2AqKl— indianz.com (@indianz) September 28, 2020
The 2015 document also points out inconsistent relationships between the tribal epidemiology centers and states. States are also required to share public health data with tribal nations and the centers, but Echo-Hawk said those relationships vary widely. “Some won’t do anything,” she said, “and others are working hand in hand.” Neither HHS nor the CDC responded to requests for an interview. When pressed on data sharing at a June congressional hearing, CDC Director Robert Redfield vowed that the problems would be remedied. “We’re committed to correcting that for all tribes,” he said. “One of the keys … is to make sure that we have secure data systems to transport the data. … As soon as that is finalized to maintain the security of the data, it will be transferred.”
"We know that Native Americans are being impacted by this pandemic disproportionately": The Tribal Health Data Improvement Act ensures that tribes can access same data as states & local governments, an obstacle that has arisen amid #COVID19. #Coronavirus https://t.co/KwZ1WZj3V2— indianz.com (@indianz) September 9, 2020
Note: This story originally appeared on Cronkite News. It is published via a Creative Commons license. Cronkite News is produced by the Walter Cronkite School of Journalism and Mass Communication at Arizona State University.
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