It’s been 259 days and the Montana Department of Public Health and Human Services continues to drag its feet fulfilling a public records request the Montana Center for Investigative Reporting originally submitted October 29, 2014, asking for newborn screening records.
Getting answers to questions about Montana’s newborn screening program and its performance, has been a daunting task. DPHHS and local hospitals haven’t exactly been forthcoming with the information MTCIR is seeking, probably due to the fact that the program’s performance was lacking, along with thousands of other hospitals around the country, a Milwaukee Journal Sentinel investigation published in 2013 found. Montana was one of the states that flat-out refused to release data requested by Milwaukee reporters. More about this later…
MTCIR’s initial request from October 2014 was not even acknowledged until 41 days later when we received the first denial letter in the mail from DPHHS Deputy Chief Legal Counsel, Shannon McDonald. The department declined MTCIR’s request under the state open records law for the newborn screening data, citing that it was private information afforded protection under state statute and the Health Insurance Portability and Accountability Act of 1996, or HIPAA.
“We are unable to release the individual health information that you have requested,” McDonald wrote in the letter. “Because of the specificity of the information you have asked for, it is not possible to sufficiently de-identify that information for release under either state statute or the safe harbor provisions of HIPAA.”
You can read all about the consequences this has for Montanans in an earlier story MTCIR published, here.
DPHHS officials vehemently denied MTCIR access to the records for months, citing patient privacy due to the “specificity” of the information we were seeking, although we never requested “individual” or “specific” information. In fact, we specifically requested that all identifiable information be redacted. MTCIR did not request children’s names, dates of birth, specific medical records, or any outcomes of the testing.
This is the only information MTCIR requested: the name of the hospital, the date the blood sample was collected, and the date the blood sample arrived at the lab. But DPHHS officials claimed from this information alone it was possible a single newborn could be identified.
On December 17 last year via conference call with McDonald and DPHHS Public Information Officer, Jon Ebelt, we tried to ask why DPHHS felt this information was private and subject to protection under state and federal law? But all we received was a generic answer that is all too common when requesting healthcare information from government agencies.
“I understand why you would think that removing the name and date of birth would be sufficient to de-identify the data, but unfortunately under HIPAA that is not sufficient,” said Shannon McDonald, DPHHS Deputy Chief Legal Counsel. “…In a state that has 12,000 births per year, we couldn’t give you any information except on a statewide level.”
Shortly afterward in a letter dated December 22, 2014, McDonald continued to deny our request as we attempted to negotiate for release of the data, citing Montana’s lack of a formal appeal process, while continuing in an attempt to say we were seeking individually identifiable information. This time it was stating we wanted actual medical records, which we certainly never asked for.
“To be clear, the Department does not have an ‘appeal process’ for declining information requested under our open records statutes,” McDonald wrote in the letter. “…The information you are requesting includes medical records of the tests administered to individual newborn children. As such, the records are protected explicitly by the HIPAA Privacy Rule, by Montana State Statute, and the general right of privacy found in the Montana Constitution.”
MTCIR reached out to attorney and Montana Freedom of Information Hotline founder, Mike Meloy, via email, to see what he thought of DPHHS’ claims that the information is protected by HIPAA.
“I don’t think they’ll give you this information without suing them, Meloy wrote. “And, I am uncertain why they think the information, if provided, would reveal the identity of a child.”
Fast-forward a few months and DPHHS completely ignored two more requests we sent contesting McDonald’s denials. That’s because Montana open records laws are some of the weakest in the nation, and there is no formal appeal process, as McDonald noted. That’s just one of many chinks in the armor making it difficult for Montanans to hold their government accountable.
But then last month, we wrote a letter to Gov. Steve Bullock asking him to look into the matter. We never heard anything back from the Governor’s office but something changed with DPHHS’ response. Out of the blue, the information we were seeking was no longer considered private nor protected by state and federal law. Say what!?
Shortly after we sent a letter to the Governor’s office, we had another conference call, this time with Carol Ballew, DPHHS Senior Public Health Epidemiologist, and Ebelt.
We had so many more questions than answers at this point so it was quite a surprise when Ballew pretty much agreed to release the data. But there was a catch. Ballew would not release hospital specific information unless “McDonald directed her to.” And unbeknownst to us, the follow up email after the call from Ebelt revealed another catch that wasn’t discussed on the call.
Somewhere along the way in the negotiating process we narrowed down our original request to just the last three complete years of data: 2012, 2013 and 2014. Our original request sought records from 2000 – present. When Ebelt emailed us back with a price quote of $50 for the data, it was only a quote for 2014 data. So we asked what happened to 2012 and 2013?
In short, DPHHS changed its story. The information we’re seeking wasn’t private anymore, but Ebelt claimed the Department still couldn’t give us the data because now the request was too difficult for the agency to fulfill.
In the process of those exchanges, several of our questions were ignored. So we asked Ebelt why this request was so difficult to fulfill for prior years but not 2014, and why none of our previous questions were addressed in his reply? We received Ebelt’s response a few days later on July 10.
“The lab started a new reporting and recording system in calendar year 2014. Data from prior years would have to be manually extracted from the previous system,” Ebelt wrote. “We could not divert newborn screening staff from their essential duties to perform this work. The only way to collect this data would be to hire temporary staff at your expense. We cannot predict how much this would cost.”
So Ebelt went a step further, going so far as to advise MTCIR that it would be so difficult to fulfill our request in fact, that it would require a team of temporary employees just to get the job done. Translation: In other words, fulfilling our request would be extremely expensive, so we should just give up now.
This is another method government agencies use to create an insurmountable obstacle to releasing the data into the public realm, and being held accountable. By creating this illusion that gathering the requested data would be some kind of earth-moving, gigantic undertaking, DPHHS is attempting to severely over-inflate the cost of fulfilling our public records request, and in the process, trying to eliminate public participation.
We’re still waiting for DPHHS to tell us what format the older records are in, and to fully explain why getting us the prior years data would be so much of a headache, among other things. That’s where we stand as of now.
Mark this down as disgraceful, yet not at all surprising. This is just another instance in which the default position of government agencies in Montana is to deny the public information that it has already paid for, in any way possible.
This story was written with support from the Fund for Investigative Journalism.