Tag Archives: evidence-based medicine

Narrative as Evidence

This past week I attended the MLGSCA & NCNMLG Joint Meeting in Scottsdale, AZ. What do all these letters mean, you ask? They stand for the Medical Library Group of Southern California and Arizona and Northern California and Nevada Medical Library Group. So basically it was a western regional meeting of medical librarians. I attended sessions covering topics including survey design, information literacy assessment, National Library of Medicine updates, using Python to navigate e-mail reference, systematic reviews, and so many engaging posters! Of course, it was also an excellent opportunity to network with others and learn what different institutions are doing.

The survey design course was especially informative. As we know, surveys are a critical tool used by librarians. I learned how certain question types (ranking, for example) can be misleading, how to avoid asking double-barreled questions, and how to not ask a leading question (i.e. Do you really really love the library?!?) Of course, these survey design practices reduce bias and attempt to represent the most accurate results. The instructor, Deborah Charbonneau, reiterated that you can only do the best you can with surveys. And while this seems obvious, I feel that librarians can be a little perfectionistic. But let’s be real. It’s hard to know exactly what everyone thinks and wants through a survey. So yes, you can only do the best you can.

The posters and presentations about systematic reviews covered evidence-based medicine. As I discussed in my previous post, the evidence-based pyramid prioritizes research that reduces bias. Sackett, Rosenberg, Gray, Haynes, and Richardson (1996) helped to conceptualize the three-legged stool of evidence based practice. Essentially, evidence-based clinical decisions should consider the best of (1) the best research evidence, (2) clinical expertise, and (3) patient values and preferences. As medical librarians we generally focus on delivering strategies for the best research evidence. Simple enough, right? Overall, the conference was informative, social, and not overwhelming – three things I enjoy.

On my flight home, my center shifted from medical librarianship to Joan Didion’s Slouching Towards Bethlehem. The only essay I had previously read in this collection of essays was “On Keeping a Notebook”. I had been assigned this essay for a memoir writing class I took a few years ago. (I promise this is going somewhere.)  In this essay, Didion discusses how she has kept a form of a notebook, not a diary, since she was a child. Within these notebooks were random notes about people or things she saw, heard, and perhaps they included a time/location. These tidbits couldn’t possibly mean anything to anyone else except her. And that was the point. The pieces of information she jotted down over the years gave her reminders of who she was at that time. How she felt.

I took this memoir class in 2015 at Story Studio Chicago, a lofty spot in the Ravenswood neighborhood of Chicago. It was trendy and up and coming. At the time, I had just gotten divorced, my dad had died two years prior, and I discovered my passion for writing at the age of 33. So, I was certainly feeling quite up and coming (and hopefully I was also trendy). Her essay was powerful and resonated with me (as it has for so many others). After I started library school, I slowed down with my personal writing and focused on working and getting my degree, allowing me to land a fantastic job at UCLA! Now that I’m mostly settled in to all the newness, I have renewed my commitment to writing and reading memoir/creative non-fiction. I feel up and coming once again after all these new changes in my life.

As my plane ascended, I opened the book and saw that I had left off right at this essay. I found myself quietly verbalizing “Wow” and “Yeah” multiples times during my flight. I was grateful that the hum of the plane drowned out my voice, but I also didn’t care if anyone heard me. Because if they did, I would tell them why. I would say that the memories we have are really defined by who we were at that time. I would add that memory recall is actually not that reliable. Ultimately, our personal narrative is based upon the scatterplot of our lives: our actual past, present, future; our imagined past, present, future; our fantasized past, present, and future. As Didion (2000) states:

I think we are well advised to keep on nodding terms with the people we used to be, whether we find them attractive company or not. Otherwise they turn up unannounced and surprise us, come hammering on the mind’s door at 4 a.m. of a bad night and demand to know who deserted them, who betrayed them, who is going to make amends. We forget all too soon the things we thought we could never forget. We forget the loves and the betrayals alike, forget what we whispered and what we screamed, forget who we were. (p. 124)

What does this have to do with evidence-based medicine? Well, leaving a medical library conference and floating into this essay felt like polar opposites. But were they? While re-reading this essay, I found myself considering how reducing bias (or increasing perspectives) in research evidence and personal narrative can be connected. They may not seem so, but they are really part of a larger scholarly conversation. While medical librarians focus upon the research aspect of this three-legged stool, we cannot forget that clinical expertise (based upon personal experience) and patient perspective (also based upon personal experience) provide the remaining foundation for this stool.

I also wonder about how our experiences are reflected. Are we remembering who we were when we decided to become librarians? What were our goals? Hopes? Dreams? Look back at that essay you wrote when you applied to school. Look back at a picture of yourself from that time. Who were you? What did you want? Who was annoying you? What were you really yearning to purchase at the time? Did Netflix or Amazon Prime even exist?? Keeping on “nodding terms” with these people allows us to not let these former selves “turn up unannounced”. It allows us to ground ourselves and remember where we came from and how we came to be. And it is a good reminder that our narratives are our personal evidence, and they affect how we perceive and deliver “unbiased” information. I believe that the library is never neutral. So I am always wary to claim a lack of bias with research, no matter what. I prefer to be transparent about the strengths of evidence-based research and its pitfalls.

A couple creative ways I have seen this reflected in medicine is through narrative medicine, JAMA Poetry and Medicine, and Expert Opinions, the bottom of the evidence-based pyramid, in journals. Yes, these are biased. But I think it’s critical that we not forget that medicine ultimately heals the human body which is comprised of the human experience. Greenhalgh and Hurwitz (1999) propose:

At its most arid, modern medicine lacks a metric for existential qualities such as the inner hurt, despair, hope, grief, and moral pain that frequently accompany, and often indeed constitute, the illnesses from which people suffer. The relentless substitution during the course of medical training of skills deemed “scientific”—those that are eminently measurable but unavoidably reductionist—for those that are fundamentally linguistic, empathic, and interpretive should be seen as anything but a successful feature of the modern curriculum. (p. 50)

Medical librarians are not doctors. But librarians are purveyors of stories, so I do think we reside in more legs of this evidence-based stool. I would encourage all types of librarians to seek these outside perspectives to ground themselves in the everyday stories of healthcare professionals, patients, and of ourselves.

 

References

  1. Didion, J. (2000). Slouching towards Bethlehem. New York: Modern Library.
  2. Greenhalgh, T., & Hurwitz, B. (1999). Why study narrative? BMJ: British Medical Journal, 318(7175), 48–50.
  3. Sackett D.L., Rosenberg W.M., Gray J.A., Haynes R.B., & Richardson W.S. (1996). Evidence based medicine: What it is and what it isn’t. BMJ: British Medical Journal, 312(7023), 71–2. doi: 10.1136/bmj.312.7023.71.

 

Questioning the Evidence-Based Pyramid

As a first year health sciences librarian, I have not yet conducted a systematic review. However, as a speech-language pathologist, I learned about evidence-based medicine and the importance of clinical expertise combined with clinical evidence and patient values. As a librarian, I’m now able to combine these experiences, allowing me to view see evidence-based medicine more holistically.

In the past month, I attended two professional development courses. The first was a Systematic Review Workshop held by the University of Pittsburgh. The second was an Edward Tufte course titled “Presenting Data and Information”. While these are two seemingly unrelated subjects, I left both reconsidering how we literally and figuratively view evidence-based medicine.

One of my biggest takeaways from the Systematic Review workshop was that a purpose of  systematic reviews is to search for evidence on a specific topic in order limit bias. This is done by searching multiple databases, reviewing grey literature, and having multiple team members  to screen papers and resolve disputes. One of my biggest takeaways from the Tufte course was that space should be used well to effectively arrange information and that displayed content should have integrity. In his book Visual Explanations, Tufte poses the following questions to test the integrity of information design (p. 70):

  • Is the display revealing the truth?
  • Is the representation accurate?
  • Are the data carefully documented?
  • Do the methods of display avoid spurious readings of the data?
  • Are appropriate comparisons and contexts shown?

When I think about visualization of evidence-based medicine, the evidence-based pyramid immediately comes to mind. It is an image used in many presentations related to evidence-based medicine:

EBM Pyramid and EBM Page Generator, copyright 2006 Trustees of Dartmouth College and Yale University. All Rights Reserved. Produced by Jan Glover, David Izzo, Karen Odato and Lei Wang.

While there is a lot of information in this image, I don’t think it is very clear. I have spoken to librarians (in the health sciences and not in the health sciences) that agree. I think this is a problem. I don’t think all librarians need to immediately know what cohort studies are, but I do think they should understand its context within the visual.

From what I have gathered and discussed with other professionals, quality of evidence/limited bias increases as you go up the pyramid. The pyramid is often explained in a hierarchical way; systematic reviews are considered highest standard of evidence, which is why it is at the top. There are usually fewer systematic reviews (since they take a long time and gather all the available literature about one topic), so the apex also indicates the least quantity. So let’s take a look each of the integrity questions about information design and investigate this further:

Is the display revealing the truth?

Is it? How do we know if this truthfully represent the quantity of each type of study/information? I believe that systematic reviews are probably the least in quantity and expert opinion are the most in quantity. That makes logical sense given the level of difficulty to produce and disperse this type of information. However, what about the types of research in between? Also, is one type of evidence inherently less biased than the ones below? Several studies suggest that systematic reviews may be systematic, but are not always transparent or completely reported and are outdated. This includes systematic reviews published in Cochrane, the highest standard of systematic reviews. While there are standards, they are very frequently not followed. However, following these standards can be very challenging and paradoxical. It’s very possible that a cohort study can be designed in a way that is much more systematic and informed than even a systematic review.

Is the representation accurate?

When I see the word “representation”, I am thinking about visual representation – the pyramid shape itself. There is an assumed hierarchy not just in terms of evidence, but also superiority here. This is a simplistic and elitist way of thinking about this information rather than being informative and useful. If you think about it, a systematic review cannot be conducted without having supporting RCT’s or case reports, etc. Research had to start somewhere. It this was seen as more of a scholarly conversation, I wonder if there would be a place for hierarchy.

I have learned that the slices of the pyramid represent the quantity of publications of each level of evidence. However, this is not something that can be easily understood by looking at this visual alone. Also, if the sizes of the slices represent quantity, why so? Quality is indicated in this version with the arrow going up the pyramid. This helps to represent idea of quality and quantity. However, if evidence-based medicine wants to prioritize quality, maybe the sizes of the slices should represent the quality, not quantity, of evidence. If it is viewed from that perspective, the systematic review slice should be the biggest because it is ideally the highest quality. Or, should the slices represent the amount of bias? This is all quite unclear.

Are the data carefully documented? Do the methods of display avoid spurious readings of the data?

I don’t believe that any data is actually represented here. Moreso, it feels like it’s being told to us so we believe it. I understand this is a visual model, but this image has been floating around so much that it is taken as the truth. I don’t think one can avoid spurious readings of the data because data aren’t represented here.

Are appropriate comparisons and contexts shown?

I do think that this pyramid provides visual way to compare information, however, I don’t think contexts are shown. Again, should the amount of each level of evidence referring quantity or quality? Is the context meant to indicate research superiority? If not, perhaps a pyramid isn’t the best shape. By virtue of its definition, a pyramid has an apex at the top, indicating superiority. Maybe a different shape or representation can provide alternate contexts.

So, how should evidence-based medicine be represented?

I have presented my own perceptions sprinkled with perceptions from others. I’m a new librarian, and my opinion has value. However, I also think this concept needs to be re-envisioned collectively with healthcare practitioners, researchers, librarians, and patients.

Another visualization that has been proposed is the Health Care Literature Wedge. It would look like  a triangle with the apex facing right indicating progressive research stages. I do think there are other shapes or concepts to consider. Perhaps concentric circles? Perhaps this can be a sort of spectrum? 3D maybe? I really don’t know. Another concept to consider is that systematic reviews are intended to reduce bias pertaining to a research question. Instead of reducing bias, maybe we can look at systematic reviews as having increased perspectives? How could this change the way evidence-based medicine is visualized?

I think the questions posed by Tufte can help to guide this. And I’m sure there are other questions and models than can also help. I would love to hear other epistemologies and/or models, so please share!

References

  1. Chang, S. M., Bass, E. B., Berkman, N., Carey, T. S., Kane, R. L., Lau, J., & Ratichek, S. (2013). Challenges in implementing The Institute of Medicine systematic review standards. Systematic Reviews, 2, 69. http://doi.org/10.1186/2046-4053-2-69
  2. Garritty, C., Tsertsvadze, A., Tricco, A. C., Sampson, M., & Moher, D. (2010). Updating Systematic Reviews: An International Survey. PLoS ONE, 5(4), e9914. http://doi.org/10.1371/journal.pone.0009914
  3. IOM (Institute of Medicine). (2011). Finding What Works in Health Care: Standards for Systematic Reviews. Washington, DC: The National Academies Press.) Retrieved from http://www.nationalacademies.org/hmd/Reports/2011/Finding-What-Works-in-Health-Care-Standards-for-Systematic-Reviews.aspx
  4. McKibbon, K. A. (1998). Evidence-based practice. Bulletin of the Medical Library Association, 86(3), 396–401.
  5. The PLoS Medicine Editors. (2007). Many Reviews Are Systematic but Some Are More Transparent and Completely Reported than Others. PLoS Medicine, 4(3), e147. http://doi.org/10.1371/journal.pmed.0040147
  6. Tufte, E. R. (1997). Visual Explanations: Images and Quantities, Evidence and Narrative. Cheshire, CT: Graphics Press.