A university went to great lengths to block the release of information about a trial gone wrong. A reporter fought them and revealed the truth.

Jodi S. Cohen

Here’s a story that shows the lengths a public university — The University of Illinois at Chicago — went to block the release of information about a child psychiatry trial gone wrong, and how a reporter — Jodi S. Cohen of ProPublica — fought them effectively at every turn to reveal the truth.

Earlier this year, ProPublica “revealed that the National Institute of Mental Health ordered the university to repay $3.1 million in grant money it had received to fund [Mani] Pavuluri’s study.” This kind of clawback is very, very rare.

We tipped our hats to Cohen then, because we had been trying for years to obtain documents that would tell the full story of the Pavuluri case, which we had been covering since 2015 when a retraction appeared. In particular, we’ve been trying to get the university to release their report of the investigation into Pavuluri’s work. We have been making a push for such reports, as we noted earlier this week in a roundup of more than 16 of them.

The university refused to release the report, citing, in part, an Illinois law that exempts the reports of disciplinary proceedings against medical professionals from disclosure. We hired an attorney in Chicago who has had big success in fighting such exemptions to look into this for us; he and an associate did some research and said it would be a very difficult case to win. Given our limited resources, we did not file a lawsuit. Without resorting to litigation, we were eventually successful in obtaining other documents, about which we’ve written.

But Cohen figured out which documents to ask for, and pursued an appeal for some that the university tried to withhold. Please read her story today for all of the details, which are eye-popping even to us, having covered scientific misconduct for years.

Kudos, once again, to Cohen. We’ll focus on two details here. First, back in 2015, Pavuluri admitted to us that she had committed “a bit of an [Institutional Review Board] infraction.” Today, Cohen revealed, among other things, that Pavuluri had “enrolled her young sons as healthy control subjects in [the] troubled study.”

A dictionary definition of “complaint”

But what is perhaps most revealing about the university’s approach here is how they responded to Cohen’s question about how many complaints they had received from Pavuluri’s patients or research subjects. One letter, they said.

It turns out they received complaints from at least eight families. How did they justify saying it was only one? “The University interpreted your use of the word complaint consistent with the definition of the word found in Merriam-Webster Dictionary (online version): ‘a formal allegation against a party.’”

Let that sink in for a second. Rather than responding fully to a question from a reporter about a trial of vulnerable children that had obvious and deep problems, a public university parsed the definition of “complaint” and sent the reporter a dictionary definition.

We’re not big fans of that approach when students use it to write essays, nor when a university uses it to keep information from the public. But if it helps The University of Illinois at Chicago understand why their behavior is so problematic, here’s a definition of “trustworthy:” “able to be relied on as honest or truthful.”

Something to aspire to.

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7 thoughts on “A university went to great lengths to block the release of information about a trial gone wrong. A reporter fought them and revealed the truth.”

  1. “Pavuluri had enrolled her young sons as healthy control subjects in [the] troubled study.”

    Why exactly that is a matter of concern beats me. A lot of good science is personal and used to be tested on oneself and near and dear. Seems like it is getting harder and harder to do any kind of bold science with all limbs tied behind one’s back in the name of “ethics”, which has come to mean an ad hoc set of rules put in place by the whims of current day society’s policy makers.

    Looks like a mountain is being made out of a molehill with respect to some of the other revelations related to this case (yes I read the ProPublica story). Biomedical research, esp. ones involving putting things in human subjects, has risks involved. Subjects getting sick is cause to pause and re-evaluate, not to throw sh!t at the fan. I think this is a case of emotions trumping reason like any other case/unfortunate incident involving children.

    1. Enrolling your own children is a problem because of the conflict of interest.

      Also:
      “NIMH would later conclude that about 86 percent of the subjects did not meet the eligibility criteria to participate because they were either younger than 13, had previously used psychotropic medication or had other reasons for being ineligible, records show.”
      is not a molehill. It is violating study design from the very beginning of the study!

    2. Dr. Pavuluri wrote the protocol; the protocol prohibited enrollment of family members. If she thought it was acceptable to enroll her kids she could have submitted a request for revision to the IRB.

      This isn’t about “bold science.” It’s about bad science and failure to protect the rights and welfare of vulnerable children in research.

  2. We need more investigators as I feel this is the tip of the iceberg.

    Dr. Aseem Malhotra recently presented to the European Parliament – https://www.youtube.com/watch?v=jcnd3usdNxo

    I would draw your attention to approx. 34 min into the video to the suggestion of 800 000 excess deaths from beta blocker use, 10 000 in the UK, from a recommendation by a scientist now fired for misconduct.

  3. Good detective work. Naturally, including relatives in clinical trials has a laundry list worth of conflict of interest violations. There is another important point this case illustrates: the myopic and biased way controls are assembled in some clinical trials. The prevalence of grabbing whatever is within an easy reach and/or control hasn’t been systematically investigated (to the best of my knowledge), but there is plenty of anecdata that “healthy” controls had been thrown together by pooling blood from med students, who wanted/needed an extra credit, or colleagues driven to donate by nagging and prodding. Non-randomness and bias, introduced by such selection, should be obvious, but apparently it isn’t. Couple of months ago I had to explain to an MD that he can not i) enter multiple samples of his own blood as N “independent” control samples, and ii) list himself as a “healthy” control since he didn’t undergo the same evaluation as did the patients (“undiagnosed” at best). Conflict of interest aside, people don’t know how sampling works.

  4. ‘We’re not big fans of that approach when students use it to write essays, nor when a university uses it to keep information from the public. But if it helps The University of Illinois at Chicago understand why their behavior is so problematic, here’s a definition of “trustworthy:” “able to be relied on as honest or truthful.”’

    That’s it in a nutshell!

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