[Alternate Title: The Sheep that Wags the Wolf’s Tail]
Photo Credit: petsadviser.com
A few years back, I made a deal with a friend to run the Chicago Marathon. I’d run several marathons previously, but none in a number of years. I was nowhere near the shape I wanted to be in when I made the deal and as both my friend and I were trying to be healthy, it was a win-win situation. At least it seemed that way. I trained in the winter, indoors on the treadmill. Once spring came, I moved outside. Week after week, I slogged through, never feeling like I was gaining any stamina, losing any weight, or getting any healthier. As summer came along and I started to stretch out my miles, I found myself getting pretty sick after running. I couldn’t eat anything without having serious digestive troubles. It got to the point that after running I’d stick with a smoothie and not much else. Even that didn’t always go well. I’d never had this experience in past training and kept chalking it up to being out of shape.
Then, one Friday evening I went for a 12 mile run – struggling through it as my gut rebelled against me. I finally finished, stopped by the 7-11 for a Gatorade, and drove home. After showering, I had a smoothie and settled in to watch the Red Sox. Next thing I knew, I was on the floor of my bathroom and next after that in an ambulance to the emergency room. I’d never been in an ambulance before – and that’s about the only positive I can think of regarding the experience.
After a night in the ER, tests that revealed nothing much, trips to my doc and a couple of specialists, the vascular surgeon told me that he suspected I had celiac artery compression syndrome (or median arcuate ligament syndrome). He also said, as I described my symptoms related to running with him, that he’d never heard of it being associated with exercise.
Being the medical librarian that I am, I set about searching PubMed (now that I knew some terms to search) to learn about what was going on inside of me. Mostly, I was looking for something that would link my training with this syndrome. Lo and behold, I found one. One. That was it. One case study about one individual – an elite runner who’d suffered something similar to what I was experiencing. Granted, I was hardly “elite” in my running, but the symptoms and situations described for this runner were just what kept happening to me.
I promptly sent a copy of the article to my surgeon and then, a couple of weeks later when I was wheeled into the operating room for an arteriogram to confirm his diagnosis, he said to everyone in the room, “If you have any questions, ask Sally. She’s read more about this than you have.” (Though fortunately not more than my surgeon!)
This is a long, round-about story to demonstrate a point – when it comes to evidence, a case study that resonates with you, the individual, is worth as much as any randomized control trial.
Photo Credit: http://libraryguides.umassmed.edu/EBM
Evidence-based practice is THE term in medicine today. As noted by Stewart Donaldson, Christina Christie, and Melvin Mark in the introduction to their book, “What Counts as Credible Evidence in Applied Research and Evaluation Practice?” we live in an evidence-based society. Evidence-based medicine, evidence-based mental health, evidence-based management, evidence-based decision making, evidence-based education, evidence-based coaching, evidence-based policy, evidence-based sex education, evidence-based fill-in-any-blank are just some of the examples they list from a quick Google search of “evidence-based practice”. For those of us who have taught any course related to evidence-based practice, we know all about the EBM Pyramid and the hierarchy of quality when it comes to evidence. At the top of the pyramid sits the randomized control trial and systematic reviews. Further down, the anecdotal case study. In other words, something happening to one or two people – like me and that other runner – simply doesn’t qualify as enough evidence to state that there is any connection between exercise and celiac artery compression syndrome.
Except when it is enough. As it is/was for the two of us (and no doubt a few others).
I found myself thinking often of my personal case history and the evidence-based pyramid during a number of sessions that I attended during last week’s annual meeting of the Medical Library Association. Why? Well, mostly because I attended a lot of talks on the new roles that librarians and other professionals working within libraries, i.e. PhDs in bioinformatics, are assuming today. People are doing an awful lot of interesting things related to specialized services. I count myself in that lot. I may well be an evaluator now, but I personally think it’s simply an extension of the specialized work that I was doing in the library. But the thing that I kept noticing – and a point I raised in one of the sessions – was when, if ever, will we get past case studies related to these services? When, if ever, will we be able to say as a profession that the successful new roles and services that some libraries are offering today are roles and services that can be adopted broadly? When, if ever, will we have enough evidence that demonstrates the success is based more on the service and the role, and less upon the individual delivering it?
Watching Twitter throughout the meeting, I noticed one person tweet a picture of a slide from Bart Ragon’s (University of Virginia) presentation, “Where is My Data Scientist?” (Disclaimer: I was in a different session at the time, thus am taking Bart’s slide out of context.) The slide read, “Unless you are Kristi Holmes or Michele Tennant – Most librarians lack any of these skills.” For those less familiar with MLA, for many years, Kristi (formerly at Washington University, St. Louis, now the Library Director of Galter Health Science Library, Northwestern University) and Michele (University of Florida) were known as the two PhD biochemistry people in our midst. They were anomalies; scientists working in medical libraries. Today we have more – Jackie Wirz at Oregon Health Sciences University, Meng Li and Yibu Chen at the University of Southern California, and Tobin Magle at the University of Colorado Denver to name a few – but they still remain oddities.
When I asked the panel of Kristi, Tobin, Jackie, Meng, and Jerry Perry (former director of UC-Denver’s medical library, soon to be the same at the University of Arizona’s health sciences library) this question about case studies versus a broader body of evidence, Jackie admitted that sometimes she does wonder if people call on her because they think “Jackie can help” or if they think the bigger, “the library can help.” I don’t mean to suggest that the two are mutually exclusive, but how much are our trends towards specialized services redefining the health sciences/medical library profession, as a whole, and how much are they simply taking advantage of particular individuals and the strengths, expertise, etc. they bring to a particular library?
One of the bits of advice that Kristi Holmes offered during this session was, “Build the best library for your institution, thus what works here may not work there.” It’s hard to argue that this isn’t good advice, yet at the same time I can’t help but wonder about how well it sums up our future as a profession. It’s becoming more and more specialized, more and more individualized, and the parts aren’t easily interchangeable anymore. This can be either good or bad for us. Thinking to what Mae Jemison said in her McGovern Lecture (I wrote about this for the NAHSL blog and will share the link when it’s published), innovation is not inherently good or bad; progressive or regressive. It’s the choices that we make around our innovations, our new ideas, our new roles, and our new services that ultimately make the difference.
I’m a librarian with the title of “Evaluator” sitting in an office in the UMass Center for Clinical and Translational Science. Jackie Wirz is a PhD biochemist and molecular biologist with the title “Biomedical Research Specialist” and an office in the OHSU library. What do we have in common? What do we do that can be teased out, taught to others, and adopted by other libraries, centers, or institutions? To me, that’s a BIG question and something worth continuing to try and answer/address as our profession continues to redefine itself for the future (and now).
A Librarian by Any Other Name 
Very nicely done, Sally, as absolutely usual. Re evidence and the N of 2, I had a similar situation a few years ago when my son, who’s living with a serious autoimmune disease that has him dependent on medication, experienced a really, really serious reaction when his meds were changed. I insisted they take him off it right away, specialists insisted they’d never seen this reaction before, we must be confusing it with something else, I insisted more with my Angry Mom Voice, they put him back on previous medication and, of course, reaction went away. A detailed search of MicroMedex revealed that this identical reaction had occurred in the pharmaceutical company’s own trials to **10% of patients*** but that data does not make it into any other sources, so you’d have to work for the pharmaceutical company or MicroMedex to know. Or have a mom who was a medical librarian.
Thanks, Cat. We’re definitely in the fortunate minority when it comes to knowing how to find and understand medical info. Great to see you last week!
When you work with nurses, you quickly learn that there aren’t many studies high on the evidence pyramids. Depending on the question/situation, case studies may be the “best available evidence.” When some NICU nurses attended my MLA CE on Finding the Best evidence, they quickly questioned the entire premise, stating that no two patients alike, and one couldn’t practice “cookbook nursing.” They even referred to EBM/EBP as the “Cult of the RCT” Since then, I’ve focused teaching on the evidence triangle used & shared by Lisa Traditi (I’ll find and email the slide) has really helped explaining the role of evidence based literature in patient care, copying her. It’s a slide that belongs in all our toolkits. Just as with lack of treatments (drugs) for orphan diseases, there are orphan diagnoses with little literature – I have one too, that took 22 years for an experienced neurologist to diagnosis. And, like Cat, I fought for my child to not be put on a drug when a family member had a horrible adverse reaction….
While not at MLA, I’m constantly reminded that that EBP is not the complete answer, and that patient-provider communication is a critical issue. Everyone needs be health information literate to the point where they need to know how to ask questions and get answers they understand. As for our role, this week, during breast ultrasound that led to biopsy yesterday, I chatted with young physician about my career and our fear that we have no future. At that point, she went into story about how the librarians at the University of Vermont found things she hadn’t found in PubMed. She saw us as having skills she’d never acquire as a clinician in today’s fast-paced health services environment.
If the biopsy shows breast cancer recurrence, I will be doing a lot of searching as a partner in my own care. So, until next week….
Hi Sally, it’s Tobin. I was so glad to see you at the “Keep libraries weird” session. I agree with Kristi’s “Build the best library for your institution” sentiment. I would also add that it’s perfectly appropriate to play to your strengths when deciding which direction to go in as far as providing new services.
For example, I think that the RNAseq analysis program that Meng and Yibu at USC is amazing, but our campus has excellent bioinformaticians who can, frankly, do it better than I can. I’m focusing my efforts into things that are more in line with my expertise and are not as well covered on this campus, mostly educational efforts around data management and database searching.
That’s not to say that “informationists” can’t learn from each other. I have taken a lot of inspiration from people at other institutions that do similar work, but I think it’s necessary to pick what fits in your environment.
Maybe this will change as these programs become more widespread and even expected at libraries, but for now I think the best strategy for growing these programs is filling in where we’re needed.
Hey Tobin! Yes, it was good to see you, too. Thanks for your thoughts here. It’s an exciting and interesting time to be in our profession, isn’t it? Take care!