Retraction Watch reports:
A Canadian journal has issued corrections on 138 case reports it published over the last 25 years to add a disclaimer: The cases described are fictional.
Paediatrics & Child Health, the journal of the Canadian Paediatric Society, has published the cases since 2000 in articles for a series for its Canadian Paediatric Surveillance Program. The articles usually start with a case description followed by “learning points” that include statistics, clinical observations and data from CPSP. The peer-reviewed articles don’t state anywhere the cases described are fictional.
Wha???
Here’s how it came out:
The corrections come following a January article in New Yorker magazine that mentioned one of the reports — “Baby boy blue,” a case published in 2010 describing an infant who showed signs of opioid exposure via breast milk while his mother was taking acetaminophen with codeine. The New Yorker article made public an admission by one of the coauthors that the case was made up. . . .
The move came as a surprise to David Juurlink, professor of medicine and pediatrics at the University of Toronto, who has spent over a decade looking into the claim that infants can receive a meaningful or even lethal dose of opioids via breast milk when their mothers take acetaminophen with codeine. The first such case, published in the Lancet in 2006 by pharmacologist Gideon Koren, was the centerpiece of the New Yorker article. . . .
The Baby boy blue case is “the only such case study, aside from the Lancet case report and the two now-retracted descriptions of the same case in Canadian Family Physician and Canadian Pharmacists Journal,” Juurlink said. “It is the most compelling published description of neonatal opioid toxicity from breastfeeding. And it is wrong.”
And here’s some background:
While the instructions for authors for Paediatrics & Child Health has at times indicated the case reports are fictional, that disclosure has never appeared on the journal articles themselves. . . .
The versions on PubMed Central also do not bear any indication the case reports are fictional.
The surveillance highlights “are intended for paediatric health care providers or physicians in training, and include learning points that briefly translate and disseminate knowledge about the disease or condition,” Elizabeth Moreau, a spokesperson for the Canadian Paediatric Society, told us by email.
To protect confidentiality
The article continues:
The journal decided when it first started publishing the article type “that the cases should be fictional to protect patient confidentiality,” Robinson [editor-in-chief of Paediatrics & Child Health] told us. “Apart from the case that led to the recent New Yorker article, all or almost all were cases of very well recognized conditions (such as congenital syphilis, fetal alcohol syndrome, serious trauma from ATVs, hepatitis C infection) where a single case report would not generate any interest or ever be cited.”
But:
Neither the instructions for authors from 2010 — when Koren and his coauthor Michael Rieder would have written their article — nor the linked list of article types — state the cases are fictionalized, or fictional. A set of instructions dated 2015, and linked from the journal’s author guidelines, indicate the “clinical vignette” should “describe a fictional case.” . . .
In the case of Baby boy blue, “the article was structured as an authentic clinical case, indexed as such, and cited as an actual clinical observation. Readers had no way of knowing it was fictional,” [Juurlink] said. “A narrative that is fictional but published in the format of a genuine case report, without disclosure at the time of publication, is functionally indistinguishable from fabrication in the scientific record.”
I agree with Juurlink on this one. But I also want to make another point, something that Thomas Basbøll and I wrote about in another context.
Setting aside the moral questions involved in presenting fiction as if were fact, and setting aside the specific calamities that arose from the false and, it seems, medically implausible “Baby boy blue” story, I think there’s a bigger problem with these fabricated case studies–even if they are labeled as fictional.
The problem is that, if you make up a case study, you can make it fit your story. A real case study is constrained by reality–and that’s a good thing.
I think it’s a bad idea for the journal to use made-up stories. By using made-up stories, you’re losing a crucial opportunity to learn from clinical judgment.
If you want to change names or circumstances to preserve anonymity, fine. You can still be constrained by what happened in the real case. Making it up from scratch, though, that’s no good. It’s the equivalent of plotting the fitted model without showing any of the data.
I agree and think the idea applies more broadly. I’ve written several textbooks and am working on another now. One feature (or “bug” to some) is that I try to use real data wherever possible – meaning the data is messy. Most texts apply the philosophy that clean or synthetic data is a good learning step: learn how it “should” work first, then apply to real cases. I don’t agree – the danger is that students end up expecting clean data and then find they don’t know what to do with the real data. And, the more AI (in all its forms) is available, the more important the cleaning of the data becomes. It is the hardest part of the analysis to automate in my opinion.
Now, synthetic data, as with fictional cases, can serve a valuable purpose. Simulating data can be quite useful for exploring how various methods work, or don’t work, on particular types of problems. But I think the primary model should be real, with synthetic data and cases reserved for deeper investigative analysis. Delegating the real stuff until later is a blueprint for creating the illusion that uncertainty can be avoided. That’s my opinion, anyway.
To me, the boundary on using synthetic data for learning depends greatly on the specific learning goal.
Are you teaching the mathematics of linear regression? Specify it and use a synthetic example to best illustrate what you are trying to teach,
Are you teaching the usage of a linear regression for data analysis? Then it can make sense to use real, messy data to show how a practitioner needs to integrate the various skills of data cleaning, applying a regression, and interpreting the results.
There is problematic instruction in both directions:
1) assuming learners are able to pick up several different skills at once and apply them together in one fell swoop
2) teaching a single skill in isolation with a toy example, and expecting learners to be prepared to immediately use that skill in conjunction with others in a complex, real-world situation.
If made-up stories, even when labelled as fictional, are bad, then does that mean novels are bad? Judging by your other posts, you are not anti-novel, so I’m curious how you reconcile those things.
Proxomitron,
I have no problem with made-up stories. In statistics research and education we sometimes call these “simulation experiments” or “fake-data simulation.” I do have a problem with people making up stories and passing them off as real. In the case of the journal discussed above, this practice has literally killed people. Fiction is fine and can be a good tool for research, teaching, and understanding. Just label it as such.
I absolutely agree, but in the post you said ” I think there’s a bigger problem with these fabricated case studies–even if they are labeled as fictional.” So, does the label make it OK, or not?
Proxomitron,
Oh, I see, good catch.
I guess my take on all this is that there’s a value to real case studies that are constrained by the facts, and I wouldn’t want fabricated case studies to be a replacement for that.
In short, the label makes it ok for that particular case, but I think it would be better for medical journals to give real case studies. Maybe they could have a separate journal called Medical Storytime that would have made-up stories.
“While the instructions for authors for Paediatrics & Child Health has at times indicated the case reports are fictional, that disclosure has never appeared on the journal articles themselves. . . .”
Change “has” to “have.”
I am not a medical researcher, so take everything I say with a grain of salt.
The one reason I can think of why you would want such fictional studies, is to investigate and have some kind of plan ready just in case a patient shows up with this unique combination of problems. Just like the military holds war games, disaster planners simulate disasters, etc… in some fields it helps to have plans for (sometimes highly unlikely) hypothetical situations, just so you don’t have to spend a lot of time thinking when the shit hits the fan.
Presenting these hypothetical situations as “case reports” and even giving the most remote suggestion they are real is just plain wrong though.
I agree that the truth shouldn’t be compromised. However, in real life every “true” clinical story is heavily edited by the teller and then re-edited by the understanding of the listener. Every young doctor has had the experience of carefully recording the history exactly as the patient recounted it and then listening when the patient puts a completely different twist on the story when talking to the big chief on rounds. Roshomon lives in every clinical encounter. A fictional account is clean and can be used to enforce a lesson. The recognition that the whole story is more than you can encompass takes time. I have several vignettes where I was on the wrong track sometimes for a long time. A fictional account can be a set of training wheels. Of course, the listener and teller must be in a position to know that the story is manufactured.
Oncodoc just alluded to the film, Rashomon, which, to my continual surprise, many people have never heard of so that the allusion tends to fall flat, at least when I refer to it. This well may be a general problem in that when we make a literary (or film) reference, the Venn Diagram has no overlap. Judging one’s audience gets harder as one ages. My father would tell stories to his very young nieces about how hot it was in NYC when he was a kid and at night during the summer, he therefore slept on the fire escape. The reply from them was, “Why didn’t you just turn on the air conditioning?”
Paul:
Your father should’ve responded, “We didn’t turn on the AC because that would’ve made it even hotter on the fire escape.”
Excellent.
This is just using the genre of a case study to impart information that could be imparted differently. Of course not disclosing is bad, but I wonder what this journal is doing also seems contra to what case studies are supposed to do. Is a case study supposed to show the paradigm case (where everything looks just like it should), or a messier edge case? I always thought the latter–they are meant to describe the weird ones–but maybe that isn’t how it works.
This excuse is particularly bad: “a single case report would not generate any interest or ever be cited.”
So why is the journal publishing stories that would not generate any interest?