Patricia Ponders


The strength and weakness of what we consider traditional American medicine (more accurately referred to as allopathic medicine) is that it focuses on the aggregate rather than the individual, on macro-level patterns rather than micro. The reverse is largely true for homeopathy.

If one stops to really consider the methodology of the analysis that underlies allopathic medicine the significance of this becomes more clear. The researcher first identifies a question that is relevant to a substantial community. It has to be a substantial community because it isn’t possible to gather enough data to show statistical significance (if it exists) from a small data set. Therefore one is limited to asking questions that at least provide the potential for collecting statistically significant data.

Supporting this focus on large-scale scientific inquiry is funding, which goes primarily to support finding solutions to conditions that effect large numbers of people, even mildly, rather than those that effect small communities severely. For example, in the USA, you’d have to be sleeping under a rock to not be aware of the tremendous push in the last decade for research in breast cancer. The push has paid off, and breast cancer has shifted from being something terrifying and deadly to one of those where, if you have to get cancer, better to get one you have a fair chance of surviving — it is considered more of a chronic illness than a deadly disease.

That is now, ten or twenty years ago it was a completely different story. Meanwhile, ovarian cancer has always been one of the really bad diagnoses to get, but because it is comparatively rare (affecting fewer people) it is not as well funded, not as well researched, not as well diagnosed, and has stayed pretty much the same for prevalence and mortality for the past 20 years. (NOTE: This is a drastic oversimplification, and I am aware of that.) If you look at the stats comparing breast cancer to ovarian, even with the dramatic improvements in treatment of breast cancer and little improvement in treating ovarian, breast cancer still kills over twice as many women in the US as ovarian.

 

Cancer Mortality Trends, BrCA/OvCa
SEER data: http://seer.cancer.gov/faststats/selections.php

How devastating an illness is doesn’t drive funding (which drives both quantity and quality of research) — it is how many lives it touches. As long as it is still a significant problem, even if we’ve made huge strides in treatment, it will still drive funding. At some point, this can become a self-perpetuating cycle, the funding drives itself and we keep funding the same things because we have for so long.
Another aspect of what drives research questions is being able to clearly define the question. This is why conditions such as fibromyalgia, that are defined by nonspecific symptoms — symptoms shared with many other conditions — tend to be under-researched. The nature of the condition means it is ill-defined and difficult to research.

Bottomline, you don’t want to get either a rare disease or one that is vague or ill-defined. God forbid that you be an outlier. You know the whole standard distribution curve analysis, right? Bell curve? 95% of all people fall within 2 standard distributions from the mean. What about those 5% of people who don’t fall in the main part of the curve – the outliers? Well, we don’t really know what to do with them — that is not what the research looks at.

Does this mean that rare conditions don’t exist? Of course not. Does the presence of a non-specific symptom for which there is no clearcut or inexpensive differential diagnostic process mean that the symptom doesn’t exist or that it is purely hypochondriacal or psychosomatic? Of course not. But it does mean that it is sometimes it is, sometimes it isn’t, and as a healthcare provider it is often expensive and difficult to tell the difference. Does that mean nothing is wrong? That is isn’t REAL? Or that there is no solution? No way to make life even a little easier? Heck no to all of the above. It does mean that the burden of figuring out the problem, solutions, what helps, what doesn’t, all tends to lie largely on the person with the problem and their loved ones.

Another complicating situation is when the patient has multiple symptoms. They might be related, or they might not; it might be a syndrome, or it might be a series of otherwise unrelated problems that just happen to be present in the same person. Almost a coincidence. As a general rule, the medical literature and research process don’t do well with complicated situations. That makes it hard for the doctors, and it isn’t something that it easy to address in training. It is hard to understand the various bits and pieces as part of an overall pattern. It is not unusual to break it down into bits and pieces and look at them one at a time. This to manage the pain, that to control the inflammation, this lifestyle change to build strength and combat fatigue, this dietary change to help manage fatigue at certain times of day.

Often the only difference between being told a problem is in your head and not is the trust between you and your clinician. By this I mean you have a pre-existing relationship with your clinician which has generated trust on both sides. Even then, there is a fair chance they will say, “How much stress have you been under lately?” or “Why don’t you just make sure you’re eating well, exercising, drink lots of water, and make sure you are sleeping well – none of those late nights, ok? Come back if that doesn’t work.” Luckily, vague symptoms sometimes respond to vague solutions.

My personal perspective on this dynamic is a little off-center. I am trained in evidence-based healthcare research methodologies and consult in this area. I have a fair understanding of how the evidence stacks up, or doesn’t, the significance of insufficient evidence to support an important question, the importance of being able to assess the levels of evidence available and make decisions based on the best available evidence (even if it isn’t perfect). At the same time, I have the eccentric joy of being a member of a family just stuffed chock full of outliers. I know quite well what happens when what is wrong with you or your loved one doesn’t fit under the curve.

Alright, well, so our healthcare and research systems are not designed to deal with all situations. The evidence is incomplete, and that is part of our process – it is always incomplete, and always will be until we stop learning and asking questions. That means the decisions, services and accommodations based on that research share the same flaws. As long as we understand that, we can adapt the decisions, services, and accommodations; we can include the outliers, those who don’t fit under the curve. The danger, the very real danger comes in trusting the research completely without questioning, without acknowledging the inherent flaws and limitations of the evidence base.

A week ago Anna Schnitzer, my friend and colleague, brought to my attention the following blog post. For the past several days, I’ve been working off and on to write this blog post.
ACRLog: StevenB: The Question They Forgot To Ask: http://acrlog.org/2008/08/22/the-question-they-forgot-to-ask/
The post was in reference to the Ithaka Report, released August 18th.
Ithaka: Faculty and Librarian Surveys: http://ithaka.org/research/faculty-and-librarian-surveys
[PDF] Ithaka’s 2006 Studies of Key Stakeholders in the Digital Transformation in Higher Education, August 18, 2008: http://ithaka.org/research/Ithakas%202006%20Studies%20of%20Key%20Stakeholders%20in%20the%20Digital%20Transformation%20in%20Higher%20Education.pdf
Around the same time as the Ithaka Report a related report was released from Portico, one of the partners on the Ithaka Report, available for download from the following page.
Portico and Ithaka Digital Preservation Survey of U.S. Library Directors – Results Released: http://www.portico.org/comment/
[PDF] Digital preservation of e-journals in 2008:
Urgent Action revisited; Results from a Portico/Ithaka Survey of U.S. Library Directors. http://www.portico.org/comment/wp-content/uploads/2008/05/porticosurveyondigitalpreservation.pdf
The Portico document refers to a survey of library directors performed in 2008, and provides a brief preliminary overview of their data, while the Ithaka Report is a fuller (but still incomplete) preliminary analysis of data collected in 2006 from faculty and academic librarians at four-year institutions. Both reports examine the significance and impact of a shift toward electronic collections, with a focus on digital preservation of electronic resources, as well as looking at how these trends impact on the profession of librarianship.
StevenB’s main take home point in his response to the Ithaka report boils down to this take-home snippet.
“If we want to avoid a further decline in the profile and relevance of the academic library, I advocate that the major change needed to ensure our important role in the intellectual life of the campus is the one that transitions us to a fully integrated partner in the teaching and learning process – in both physical and virtual classroom spaces.”
This was primarily in response to this sentence from the original report.
“Over the course of these three surveys, we have tested three ‘roles’ of the library—purchaser, archive and gateway.” Ithaka, op cit, p. 5.
The Ithaka Report is quite overt about the limitations of the study — that their focus is on academic libraries and “how to best serve faculty” (p. 4), not students, administrators, staff, or community. In other words, what they do is important and useful as far as it goes, but it does not in any sense look at the larger view of the roles and functions of academic librarians, much less librarianship as a whole. It leaves plenty of room for other groups to make similar enquiries about the future of the profession.
The Portico overview statement provides a footnote stating their restrictions on data collection and response rate.
“A web-based survey was sent to 1,371 library directors at four-year academic institutions in the United States. The survey launched on January 11, 2008 and stayed open for 11 days. A total of 186 full submissions were received, in addition to 10 partially completed surveys, for a response rate of 13.6%.” Portico, op cit., p. 1.
There are discussions currently objecting to the response rate as insufficient. Personally, I find the response rate rather remarkable and quite satisfactory, especially given that this is for a survey of library directors sent in January of the year and open for response for only eleven days. My concern is that the timing and constraints on the survey would tend to self-select toward responses from persons who care passionately about the topic, and would tend to exclude opinions from more moderate viewpoints. The Portico analysis did make an attempt to account for a possible skew or bias in the results, but this would remain a concern of mine to be kept in mind while reading the report.
“We found no evidence of response bias according to the Library Materials Expenditure of the institutions polled; our sample mirrored the larger population in its LME breakdown (according to ACRL data). We also checked to see if the survey might be skewed towards those who were actively concerned about preservation or favorably disposed towards Portico, since the survey announcement came from the librarians on the Portico Advisory Committee. … In order to correct for this bias, we removed responses from Portico participants at random from the sample until the proportion of Portico participants in the sample matched that of the larger population.” Portico, op cit, p. 1.
Now, beyond questions of the validity of the studies, moving on towards the bigger picture. Both reports are looking at the impact of current trends on the future of the profession. The Ithaka Report provides the following vision of what an academic library does.
“The [academic] library exists to maximise its value to is constituency, both improving its own stature locally as well as facilitating scholarship, teaching, and learning among its community.” Ithaka, p. 33
I agree completely with StevenB’s observation that the education component is and has been historically a critical role for librarians. I would even suggest that this role is but a small element in a role that is both a broader and deeper element of librarianship—that of the expert “dog with a bone” searcher, the person who (within the questioning and research processes) is partner, facilitator, scout, guide, translator, mentor, even information magician—in short, the Trailblazer, in the sense in which Vannevar Bush used the term.
“There is a new profession of trail blazers, those who find delight in the task of establishing useful trails through the enormous mass of the common record. The inheritance from the master becomes, not only his additions to the world’s record, but for his disciples the entire scaffolding by which they were erected.” Bush, Vannevar. As We May Think. Atlantic Monthly July 1945. http://www.theatlantic.com/doc/194507/bush
I have never forgotten the first time I read those words, the way my brain burned, as if a voice inside me shouted, “This is what I am. This is what I do. This is what I will be.”
In my mind, I tend to think of the rest of what we librarians do as falling into tasks that support this one unifying fundamental and critical function—discovery. The functions examined by the Ithaka Report—gateway, archive, buyer—are important parts of what we do but do not represent the overarching unifying theme of librarianship. While education comes closer to connecting with the fundamental mission of the profession, I would argue there are many important and useful functions of librarians that are not overtly stated in images of the profession by either the patrons or the librarians. There are assumptions being made on both sides about what the profession of librarianship is, does, and supports. Decisions being made now will impact on those unstated functions in unpredictable ways, that may prove to be to the detriment of all for having not been addressed in the overt decisionmaking process.
What I looked for from the Ithaka Report was a clarification of the phrase “among its community”. Every academic institution is embedded in a local community as well as having broader national and international partnerships. The academic libraries’ roles and duties should reflect these relationships in addition to direct service to the immediate local academic community of that specific institution.
Portico asked a series of useful and provocative questions at the close of their report.
“* Who is responsible for ensuring the digital preservation of e-journals? Can e-journal
preservation be sustained if only a relatively small proportion of libraries is engaged
in supporting e-journal preservation initiatives?
* If it is desirable for participation in the digital preservation of e-journals to move
beyond the ‘trailblazers’ of the library community, when and how might that ‘tipping
point’ be reached? In the meantime, is there a risk that libraries could wait until they
are out of options?
* What can community leaders and e-journal preservation initiatives themselves do to
help simplify the e-journal preservation landscape?
* What is the appropriate place for e-journal preservation efforts in the face of
competing priorities?”

Portico, p. 10.
I am concerned that while the Ithaka Report does a good job of looking at the relationship between faculty and librarians, and Portico is examining the assumptions of library directors with respect to digital preservation, no one is yet examining in similar ways the relationships of libraries with and the impact of digital preservation on other community members — students and local communities in particular. I suspect there are assumptions being made about what academic libraries do, assumptions of the sort where people think the library is, of course, doing XYZ, but in reality the libraries feel it is someone else’s job.
One example of this that has come to my attention is the role libraries play (or could play) in local disaster response. Does the library, in planning digital preservation initiatives and in making de-accessioning decisions, make decisions based on the day-to-day needs of the faculty, administrators, and students of the institution? Do they also consider what potential disasters are most likely to occur in their local physical environment and what information would be needed in what format by the institutional and regional decisionmakers in responding to these specific types of crises? If the decisions are focusing on the day-to-day needs are the institutional and regional decisionmakers aware that this is what is happening, or are they assuming that the library has kept the appropriate information in appropriate formats and locations for responding to the crises that could be anticipated? If the library is not keeping information to address these situations, who is? What other situations or information needs might be assumed as part of the role of the library, but have not been made overt to the library as part of their role?
I very much liked the Ithaka Report’s emphasis on holistic and collaborative approaches to making these types of decisions, and encourage institutions to adopt those themes in their planning (p.33).
“It is equally if not more important, however, to engage with local faculty to determine what changes are and are not appropriate for the local campus environment. As we move further into the digital age, questions of campus information strategy must receive serious consideration from a variety of different players; care must be given to ensure that we develop a future in which scholarship, teaching, and learning are effectively supported, and in which important scholarly values are not lost.” Ithaka, p. 33
Indeed. But let’s not simply engage in these discussions with local faculty, but with a broader community of stakeholders.

“Health is personal. Health Care is not. The term is a euphemism for Condition Treatment, and it’s not about patients. It’s about systems, and most of those are both proprietary and closed.”
Doc Searls. “The Patient as the Platform” LINUX Journal. http://www.linuxjournal.com/content/patient-platform
I have for years been pondering the difference between the professional and personal views of the patient experience. I have read many articles about it, had many discussions, have many long-winded ways I describe it, and even touch on the topic in the intro to my book. I don’t know that I have ever seen the topic described so succinctly and elegantly as in the above quotation. I don’t know that a geek-oriented computer programming, software, hardware journal would be very last place I would look for this type of insight (geeks are awful smart folk, after all!), but it is probably getting close to the end!
Part of what interests me about the quote is what it says, part is where I found it, part is how I found it, part is how other might find it. For myself, I was following a conversation on Twitter, which lead to a person I didn’t know, who said they were reading this. In other words, serendipity – accidental discovery. Or was it?
In my younger years, I made a point of routinely scanning journal Table of Contents that published in areas that most interest me. I also liked to skim the new books shelves in the libraries I frequented, ask other people what they were reading, and generally laid the framework of my activities to keep me engaged and current with my interests. When the Internet became more prominent, these behaviors changed — I searched databases, set up SDI searches and autoalerts, had Table of Contents from journals emailed to me, registered to receive email alerts when articles of interest were cited, and joined email groups that discussed and shared information on my areas of interest. Even more recently, this has changed again. As technologies have evolved the ways have continued to change in which I keep current and engage with other persons with common interests. I like to tell people that my top productivity tools are (1) Del.icio.us; (2) Twitter; (3) Second Life. Then I add in Google, Flickr and Slideshare.
The point is that I built habits to bring useful and relevant information to me, remaining engaged with communities and individuals who shared my interests, so perhaps, my discovery of this very interesting article in an unusual place was less accidental and more a case of the prepared mind. [footnote 1]
Or perhaps it is that being engaged with a topic means being engaged with other people also interested in that topic? A popular phrase in the social media community is about being “engaged in the conversation.” Ah, but where is the conversation? For science, the published journals have traditionally been a way to capture and record the thoughts of different knowledgeable people working in related areas. Recently I’ve wondered if the scientific conversation is still primarily being held in research journals, or is it moving (little by little) into other venues? [footnote 2] I had a discussion over lunch with a research faculty member about this very topic, roaming around issues of whether peer review actually offers the benefits claimed for it, the failing economic models of academic publication, and is the model of journal publication a practical and sustainable model for the future. Then there is the looming question of if the “traditional” models are no longer viable, what are our other options? All excellent questions to ponder for future discussions.
Back to the discovery of Doc Searl’s interesting healthcare article in the LINUX Journal. I cast my net widely – engaging ing discussion with communities in healthcare, technologies, education, and more. I could have found this through any of those, but found it through an overlap — a geek type that does Twittering for a healthcare organization (MD Anderson).
Doc Searls article Tweet.
Now ask yourself, how did you find this article? What habits or connections or conversations lead you here?
FOOTNOTES:
1. “Dans les champs de l’observation le hasard ne favorise que les esprits préparés.” “In the fields of observation chance favors only the prepared mind.”
WikiQuote: Louis Pasteur. Lecture, University of Lille (7 December 1854). http://en.wikiquote.org/wiki/Louis_Pasteur
2. Emerging Technologies Librarian. “Science as Conversation, Part 2: Evolution of Scientific Conversation.” http://mblog.lib.umich.edu/etechlib/archives/2008/06/science_as_conv_1.html