Montana DPHHS gets creative in denying public records request

denied

 

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

Follow Jeremy Chapman and the Montana Center for Investigative Reporting on Twitter.

  • Tom R

    Jeremy,

    I’m curious about your reason behind the sudden intense scrutiny of the Newborn Screening program at the DPHHS. Are you suggesting that a chronically underfunded and understaffed section of the DPHHS is lying about the time and resources it would take to fulfill your request? Maybe they are more focused on doing their job and completing the newborn screens as quickly as possible to protect the state’s youngest citizens from horrible and treatable diseases. You obviously are an expert in laboratory information systems and know more about the huge amount of time and resources it takes to archive and store years worth of data than the people at the DPHHS. They can only complete the newborn screens as quickly as they are received from hospitals in a geographically huge state.

    From the DPHHS website:

    To ensure the best possible outcomes, the MTPHL has just recently begun monitoring the following quality indicators. As part of quality improvement, each birthing facility receives a quarterly report of their performance in these quality indicators.

    Time from birth to collection of initial screening specimen (Target 24 – 48 hours)

    Time from collection of initial screening specimen to delivery in the MTPHL (Target 3 days)

    Time from delivery to result (Target 5 days)

    Percent of specimens received with missing critical information (Target less than 3%)

    Percent of specimens submitted that are satisfactory for testing (Target is greater than 97%)

    • Jeremy Chapman

      Hi Tom, thank you for reading the story and reaching out to us.

      Some points that should clarify things for you:

      1) We are not suggesting anything, the proof is right there with links to the original documents where DPHHS has changed its story several times, if you would like to read them.

      2) You, as a tax-paying citizen, have the right to inspect public records from any government agency, any time you choose. So when an agency refuses to be held accountable, and chooses instead to remain unchecked by the people, that is a threat to democracy. This is where investigative reporting comes in, to shine a light on betrayals of the public’s trust by government and other institutions. DPHHS has fought long and hard to keep the performance of Montana’s hospitals hidden, from you and everyone else. Without investigative reporting, there is no democracy.

      3) Lab technicians that do newborn screening testing do not deal with nor fulfill public records requests. This is done by an agency’s public information officer. So I’m not sure what your point is about “Maybe they are more focused on doing their job,” since their focus would never be diverted from their primary job responsibilities and public records requests are handled instead, by an agency’s PIO.

      4) Yes, we are aware of the new quality indicators DPHHS is monitoring. It is in fact investigative reporting that is the entire reason why DPHHS, along with every other state health department in the country, is now required to be monitoring all of these new quality indicators. In reponse to investigative reporting done by some of our friends at the Milwaukee Journal Sentinel, Congress unanimously passed the Newborn Screening Saves Lives Reauthorization Act of 2014, requiring state health departments to monitor the new quality indicators, as well as provide other reports. The bill was signed into law by the President on December 18, 2014.

      You can read all about that, here: http://www.jsonline.com/watchdog/watchdogreports/us-house-unanimously-approves-newborn-screening-bill-b99407039z1-285443681.html

      • Tom R

        Jeremy,

        I completely agree with you that government on all level must become much more transparent responsive to requests for information. It is the completely within the rights of all taxpaying citizens to be allowed access to governmental information. Although in this case, HIPPA does cause some problem with separating protected health information from the logistical data that you requested. What I disagree with is the tone of your reporting. In my opinion, you are implying that the DPHHS employees are denying you access to
        this information due to incompetence, and/or spite. Or that they refuse to cooperate because they feel they are above the scrutiny and accountability of the public. For your information, the Clinical Laboratory professionals that work in the MT Public Health Laboratory, and officials that work in the Newborn Screening Program are extremely accountable to the newborns and their families that they serve every day, and have been for
        a very long time. The nature of your reporting questions the professionalism and dedication of these people.

        • Jeremy Chapman

          Dear Tom,

          I’m sorry you feel this way. But I still think you’re missing the point, and reading too much into it. We’re not at all questioning the clinical laboratory scientists (such as yourself), their work ethic, professionalism, or dedication etc. We’re questioning the actions of the “Department.” And in particular, the individuals within the Department who have been that have been blocking the public’s access to this information for almost nine months now, which is in no way private or protected under HIPAA. Since HIPAA became law, it has been common practice for health-related agencies to interpret it in an overbroad manner. We don’t think it’s incompetence or spite, (and again, we’re not talking about lab employees whatsover). It’s just unfortunately become common practice and the default position of agency Department heads, lawyers, and PIOs to deny public records requests.

          According to your LinkedIn profile, you were a Clinical Laboratory Scientist at the Montana Department of Public Health and Human Services’ public health laboratory from May 2004 to October 2009. So you’re obviously personally invested and have strong feelings about this because you most likely still have a lot of friends at MT PHL, and you think we’re picking on them, or your previous work there. But I assure you, we’re not. And again, that is not the intention. If you’ve read all our stories on this from the beginning, then you know that DPHHS invoked its lawyer against us immediately, right out of the gate, for simply making the request. That in itself, is not normal.

          We agree with you that “government on all levels must become much more transparent” as you said, and DPHHS is no exception. So yes, since it has been nearly nine months and we still don’t have the data we have been requesting, we do feel DPHHS has made it clear that it does want to be subject to public scrutiny. Why else would you fight so hard to keep the data a secret? Not to mention the Department has changed its story several times as to why it cannot release the data. And still today continues to refuse to release key pieces of the data. But that is in no way the fault of laboratory scientists or any other lab employees, as stated in my previous reply. You worked in the MT PHL for over five years. In that time, how many public records requests came your way? That’s our point. You’re not the one who decides how transparent the agency should be/could be. That rests with the Director, the legal team, and the PIO etc. I’m confident you didn’t expect them to perform blood tests while you were there, and also that they never expected you to do their job. In other words, it has nothing to do with your work or that of lab employees.

          Hopefully, that clears things up. We apologize for any confusion, but stand by our reporting. If you would like to talk about this sometime on the phone, please don’t hesitate to contact us, we’d love to hear from you.

          Submit your contact information here: http://mtcir.org/contact-us/

          • Samuel Yang

            Jeremy & Tom,

            Sorry to be jumping in so late, but I am very interested in this issue, being formerly in charge of clinical follow-up activities for NBS in Montana before leaving Shodair Children’s Hospital almost 6 months ago. One of my pet peeves was the lack of open communication between DPHHS mid-level management and myself (no problem with the staff directly responsible for laboratory testing). This “closed door policy” clearly does not serve the interests of our citizens … FYI, Montana is one of only 3 states (plus Puerto Rico) that does not have an community advisory community to oversee their NBS program!

            Sam

  • Geri Portillo1

    Excellent commentary ! I was enlightened by the analysis . Does someone know if my company might be able to access a blank a form form to use ?

    • Miranda Mora

      Timely piece . Just to add my thoughts , Hi Geri , my friend found a sample document here http://goo.gl/vlHAzq