Healthcare data sharing is a key component of the Trusted Exchange Framework and Common Agreement, but for the Native American community, it poses significant challenges, particularly with the implementation of a new electronic health record for the 574 recognized Tribes in the United States.
Barriers to Data Sharing
Tribal members are hesitant about sharing data, according to Krystal Schramm, Michigan HIMSS Tribal Liaison and vice chair of the HIMSS Native American and Indigenous Community. “It’s very difficult with years of distrust with the government to move forward with health IT,” Schramm said.
HealtHIE Nevada Client Experience Analyst Brenda Hood, who is also the Nevada HIMSS Tribal Liaison for the Native American and Indigenous Community, noted that data sharing is a major concern. They are very hesitant when they hear data sharing, trying to be more protective of their communities.
Data Ownership and Access
Another ongoing issue is data ownership. Data use agreements with states mean Tribal communities need permission to access their own data. Marcelino C. Flores, Tribal Liaison, Pima County Health Department in Arizona, emphasized the need to end this paternal relationship. “We need to get away from that,” Flores said.
Flores became the Native American specialist at the Maricopa County Health Department after Arizona hired a Tribal state epidemiologist two months ago. They are just beginning to turn toward collaboration, according to Flores.
Progress is being made, though it is often slow and varies by state. Krystal Schramm said they have made progress in Michigan. It starts with the Tribe trying to get the data, which has to go to the state’s legal team and data sharing agreements. Tribes are their own public health entities.
Related: Australia backs biotech with tax incentives
Advocacy and Education
The National Indian Health Board, a nonprofit, non-governmental organization, advocates for the 574 federally recognized American Indian and Alaska Native Tribes. The Indian Health Service, a federal agency of the Department of Health and Human Services, provides care for those who live on reservations.
The HIMSS Native American and Indigenous Community has grown, with the number of HIMSS Chapter Tribal Liaisons increasing from three to eight. This community now includes members from Hawaii-Alaska, Oklahoma, Michigan, Montana, Nevada, New Mexico, and Washington.
Evan Dunne, former Government Relations manager at HIMSS, noted that HIMSS plays a role in advocacy and education. Another perspective is around education, Dunne said. A lot of times Tribes and Tribal health are left out of policy discussions, which exacerbates equity conversations. They want to make sure Tribes are part of the discussion.
Progress will be incremental, with setbacks and successes along the way, as the Native American community continues to work through the complexities of healthcare initiatives. The growth of the HIMSS Native American and Indigenous Community and the increased awareness of Tribal health issues are positive steps towards addressing the disparities in healthcare faced by Native American communities.
All of us play a role in that, according to Schramm. They bring that voice to the table – in things like health IT, advocacy, bringing that Tribal advocacy role out.