The Health Research Funding Scandal Parading in Plain View
Why Can't We See the Canadian Institutes for Health Research-Funded Research We Pay For?
Right off the top I should acknowledge that a lot of the research funded by the Canadian Institutes for Health Research (CIHR) is creative, rigorous, and valuable. No matter which academic category I looked at during my explorations, at least a few study titles sparked a strong “well it’s about time” reaction.
But two things dampen my enthusiasm:
Precious few of the more than 39,000 studies funded by CIHR since 2011 are available to the public. We’re generally permitted to see no more than brief and incomplete descriptions - and sometimes not even that.
There’s often no visible evidence that the research ever actually took place. Considering how more than $16 billion in taxpayer funds has been spent on those studies over the past 13 years, that’s not a good thing.
If you’ve been reading The Audit for a while, you know that I’ll often identify systems that appear vulnerable to abuse. As a rule though, I’m reluctant to invoke the “s” word. But here’s one place where I can think of no better description: the vacuum where CIHR compliance and enforcement should be is a national scandal.
I’ve touched on these things before. And even in that earlier post I acknowledged how:
…as a country, we have an interest in investing in industry sectors where there’s a potential for high growth and where releasing proprietary secrets can be counter productive.
So we shouldn’t expect access to the full results of every single study. But that’s surely not true for the majority of research. And there’s absolutely no reason that CIHR shouldn’t provide evidence that something (anything!) productive was actually done with our money.
Because a well-chosen example can sometimes tell the story better than huge numbers, I’ll focus on one particular study in just a moment. But for context, here are some huge numbers. What follows is an AI-powered breakdown by topic of all 39,751 research grants awarded by CIHR since 2011:
Those numbers shouldn’t be taken as anything close to authoritative. The federal government data doesn’t provide even minimal program descriptions for many of the grants it covers. And many descriptions that are there contain meaningless boilerplate text. That’s why the “Other - Uncategorized” category represents 72 percent of all award dollars.
Ok. Let’s get to our in-the-weeds-level example. In March 2016, Greta R. Bauer and Margaret L. Lawson (principal investigators) won a $1,280,540 grant to study “Transgender youth in clinical care: A pan-Canadian cohort study of medical, social and family outcomes”.
Now that looks like vital and important research. This is especially true in light of recent bans on clinical transgender care for minors in many European countries following the release of the U.K.’s Cass report. Dr. Cass found that such treatment involved unacceptable health risks when weighed against poorly defined benefits.
A website associated with the Bauer-Lawson study (transyouthcan.ca) provides a brief update:
As of December of 2021, we have completed all of our planned 2-year follow up data collection. We want to say thanks so much to all our participants who have continued to share their information with us over these past years! We have been hard at work turning data into research results.
And then things get weird. That page leads to a link to another page containing study results, but that one doesn’t load due to an internal server error.
Before we move on, I should note that I come across a LOT of research-related web pages on potentially controversial topics that suddenly go off-line or unexpectedly retire behind pay walls. Those could, of course, just be a series of unfortunate coincidences. But I’ve seen so many such coincidences that it’s beginning to look more like a pattern.
The good news is that earlier versions of those lost pages are nearly always available through the Internet Archive’s WayBackMachine. And frankly, the stuff I find in those earlier versions is often much more - educational - than whatever intentional updates would show me.
In the case of transyouthcan.ca, archived versions included a valid link to a brief PDF document addressing external stressors (which were NOT the primary focus of the original grant application). That PDF includes an interesting acknowledgment:
This project is being paid for by a grant from the Canadian Institutes of Health Research (CIHR). This study is being done by a team of gender-affirming doctors and researchers who have many years of experience doing community-based trans research. Our team includes people who are also parents of trans children, trans adults, and allied researchers with a long history of working to support trans communities.
As most of the participants appear to have financial and professional interests in the research outcome, I can’t avoid wondering whether there might be at least the appearance of bias.
In any case, that’s where the evidence trail stopped. I couldn’t find any references to study results or even to the publication of a related academic paper. And it’s not like the lead investigators lack access to journals. Greta Bauer, for example, has 79 papers listed on PubMed - but none of them related directly to this study topic.
What happened here? Did the authors just walk off with $1.2 million of taxpayer funding? Did they do the research but then change their minds about publishing when the results came in because they don’t fit a preferred narrative?
But the darker question is why no one at CIHR appears to be even mildly curious about this story - and about many thousands of others that might be out there. Who’s in charge?
There should be a requirement that the results be published.
There will be studies that have a null result (the intervention tested had no effect), but even that is useful information, in that it can save everyone else from repeating the same mistake. Might be hard to get those sorts of studies into a peer-reviewed publication, but, even so, writing it up and putting it on the CIHR website would be useful, if only for the academic discipline of having to write up what you did, why you did it, how you looked for an effect, whether or not it worked, and what that means.
As it stands, people are doing research and then passively or actively burying the results, when either “nothing happened” (as above) or “what actually happened wasn’t what we wanted to happen”. In the latter case, the failure to publish/share just reinforces the echo chamber. For example, some researchers “want” trans interventions to “work”, and they won’t publish anything that shows their beliefs aren’t supported by actual results. Hence, you’ll read that there’s nothing published to say trans interventions are harmful or useless. That lack of published evidence is then used as evidence to support continuing to do that which could well be harmful or useless.
Failure to publish this stuff is problematic, either way.
Simple fix. Don’t hand out money for research without requiring a “report” at the end.
This is very troubling. How does André Pelletier's assertion that "There are absolutely reports generated from all of this work" square with David's finding? I'd be happy to see this further looked into (as a minimum, see a response from CIHR).
That you picked a transgender study for an example is a bit unfortunate because it is a subject that provokes its own biases.
For the larger picture, there should be aggregate data on the 39,000 studies: Status, report, etc.