Friday, March 24, 2023

Tribal Data, Power and Information in the COVID Era

Diving Into Tribal COVID Data To Determine When New Mexico's Tribes Will Open Up


Vaccination and COVID data. You would think that these are two things readily available to the public. They are in most cases, but there is a lot to be said about the data. Especially the data in Indian Country, where this subject can get perplexing.

Initially, when COVID-19 struck our communities last year, tribes tried to get prepared the best they could. Who thinks they will be a community leader during a global epidemic? Many of our systems and the people who manage those resources were not adequately prepared to deal with something of this magnitude: whole new community ordinances, systems and ways of disseminating that information.There were confusing numbers, and some communities were left wondering where they stood, officially. The state would give one number, Indian Health Service another, and the tribe was often left to try to answer why the numbers didn't match or a multitude of other questions. Some may ask why officials would not release all the pertinent info. This is a rabbit hole soo deep you're gonna think you're Alice when we're done.

For those that hadn’t ever heard the term “data sovereignty,” it gets thrown around a lot nowadays in tribal circles. Why? Because we are creating more data than ever before in our history, and we have learned from history how bad data can be detrimental. What types of data are we talking about? Well, it can be anything, really. Population, education, health or even data on pregnancy.

It is an easy cop-out to say tribes are not telling the full story. Some will say the IHS data is skewed because of how it combines numbers. And then you have state data. Here is what is the biggest issue: You have multiple data collection efforts being completed by multiple agencies. The state, federal, tribal and third-party contractors all take in information. Some of that information is automatically HIPPA protected—mostly on the healthcare side, physical and mental. The tribe can take in its own data and report whatever number they want to the state. But if that data was collected by a federal entity, that data may not be shared with the state without  a “data-sharing agreement.”

Jennifer Nanez is a former IHS Employee and now a tribal consultant working over 30 years in tribal communities. She shared how crazy this situation is. “Here is an example that happens often in Indian Country. Imagine you have a brand-new clinic. The health side could be managed by IHS, the Behavioral Health was 638 Contracted [P.L. 93-638, authorizes Indian tribes to contract for the administration and operation of certain federal programs which provide services] and the COVID situation by the state DOH. If there was a need to share data, say, for contact tracing to occur, all three entities housed in the same building might not be able to share information with each other.”

Furthermore, data always has the tendency to get misconstrued. Here is a great example. A tribal member might get COVID tested by the state DOH at an off-reservation site. When that data is released, DOH may place that in the column of the number reported for a particular tribe, when in actuality that person could be hundreds of miles from the community they claimed. This has caused a lot of confusion for many tribal people as well as for the leadership of these communities. It is hard to assess where the hot spots are when the numbers might not be accurate. Zip code 87004 will give you Sandia Pueblo, but also portions of Bernalillo and Rio Rancho counties.

One tribal advocate I spoke to, who asked to remain nameless due to their highly sensitive work, talked about the lack of people in tribal communities to actually help aggregate or break down the data. "We hardly have anyone that can take a data set and make sense of it all, enough to make suggestions or use that information effectively. Not to mention, there is a whole other technical IT side to this story that involves encryption, firewalls, secure servers and software. There have been stories of entire data sets rendered unusable because of proprietary software and license agreements not being handed down the chain of command as new people are hired or fired."                                                    

That rabbit hole gets deeper when, for example, as Jennifer Nanez brought up, “Sometimes even we as professionals are not speaking the same language as the data people. You might be able to request data for 'how many' visits a clinic had for a year. They are gonna provide data on every visit on record, thousands possibly, when, in fact, you were wanting data more specific to your actual community members."

This can leave tribal leaders without all information they may need to make important decisions for the health of their people. The statistical data that is out shows positive results for our tribal communities across the country and especially here at home. Oddly enough New Mexico knows how to distribute health care effectively, and we sit atop the nation in percentage of adults receiving the vaccination. Our state is nearing herd immunity faster than anyone else. A large part of that positive number comes from the tribal communities. Places like Sandia claim a nearly 90 percent vaccination rate. Other pueblos, such as Laguna, Acoma and Kewa, are all reporting numbers well past 70 percent and are currently vaccinating youth 12 years old and up. You can find vaccination numbers nearly weekly on tribal land these days.

The Paper. reached out to many local tribes and IHS in regards to vaccination data and received no response.                                                                                                                                                


No comments on this item Please log in to comment by clicking here