Dyslexia: health, literacy and libraries

Session 11 (MC/MLA Update):  Margery Katz, MA, JD; Julie A. Gocey, MD

I had the honor of attending this thought-provoking session on Sunday afternoon.  Dr. Gocey started things off by having everyone stand and then asking us to sit down as we responded “yes” to whether we knew an immediate family member affected by dyslexia, a classmate or friend, and finally anyone in our lives.  I was in the middle group, and of course, by the 3rd question, everyone was sitting down.

Some facts:

  • Dyslexia is a term for an unexpected difficulty learning to read (and relatedly, write and spell).
  • ~1 in 5 people have some level of dyslexia (from mild to severe).
  • MRIs show that people affected by dyslexia are unable to use certain key areas of the brain, but they also show neurobiological changes and improvements that can happen with educational treatment.
  • NICHD definition: deficit in phonological component of language, unexpected in relation to other cognitive abilities.
  • What dyslexia is not: reading backwards, a symptom of lower IQ, a life sentence of lower achievement.
  • Untreated dyslexia, however, can result in: poor reading comprehension, poor reading experiences, less vocabulary, and less background knowledge (that would normally be picked up from reading).
  • What is needed to help treat dyslexia is evidence-based reading instruction; often referred to as multi-sensory structured reading instruction.

Dr. Gocey and Margery Katz called on us to all work together, to support early detection, promote adult screening, provide equal access, and to coordinate support from clinics, hospitals, schools, and libraries.  They mentioned that physicians are not routinely trained to identify dyslexia, and that screening is not standardized.  In fact, the lack of access to (as well as insurance coverage for) testing is itself a barrier.  Two bills related to these issues were brought up to the state legislature, and while they both died, there was the positive fact that they got some coverage and conversations did start around the topic.

The results they presented on a librarian survey were perhaps not surprising, although one may have hoped otherwise: just like the general public, librarians show a disconnect in their knowledge of dyslexia.  In addition, most library resources dedicated to disabilities focus on “brick & mortar” problems like building ramps and providing resources for the blind.  This is certainly not a bad thing, but libraries and librarians are missing a big piece of the problem when they don’t address, in addition, reading disabilities (which is, perhaps, ironic).

I went to this session to learn more about a topic I knew little about, and I was not disappointed.  In fact, there was so much information, I wasn’t able to keep up in my notes!  Fortunately for both me and you, the wonderful slides have been posted.  Check them out for lots of links to great resources!

The Resource Library as Host for an eResources Consortium

Neal’s session provided an in-depth look at an e-resources consortium that began a decade ago, and still exists (albeit in a changed form) today.

Session 9 – Neal Nixon

Neal’s session provided an in-depth look at an e-resources consortium that began a decade ago, and still exists (albeit in a changed form) today.

Presenting on an e-Resources Consortium

The consortium, centered around the University of Louisville (Kentucky) Kornhauser Health Sciences Library, began in 2000 when 9 metro-area hospitals and their libraries decided to work together and from the Louisville Medical Center.  A “cooperative spirit” prevailed that made the consortium possible, and certainly contributed to its initial success.

Some Nuts & Bolts (of the early days):

  • Kornhauser, with a committed budget for eresources, was committed to paying its original share and did all the negotiations.  The hospital libraries simply divided the remainder.
  • Key part of the negotiations: the resources were purchased not as site licenses, but as numbers of seats.  In some cases, additional seats weren’t even necessary; the current number was sufficient for all members!
  • Initial resources: MDConsult, Stat!Ref, Ovid.  It became clear that the resources desired were those needed for clinical support, not research.
  • Choosing the databases was the easy part…The difficulties came during the discussions around which collections and journals to subscribe to.
  • Each library sent a representative to make the case.  However, Kornhauser was the “800 pound gorilla in the room” and could make final decisions, since it was doing the negotiations and paying the bulk of the costs.

From these basic facts about the beginnings of the consortium and how it worked, Neal went on to discuss some of the issues.  The first being, not surprisingly, working with IT.  But work they did.  The next big issue (and, in fact, ongoing issue) is that Kornhauser was in charge of billing, which had complications both in actually collecting from the hospitals in the consortium and in dealing with the large amounts of money that then sat in the University’s accounts until the resource bills were paid.  Another interesting feature of Kornhauser’s handling of the accounts was that they then also saw all the statistics…and saw that some of the hospitals weren’t using the resources they paid for!

10 years later, a few things have changed.  Members have come and gone, and the cooperative spirit has changed into a competitive jealousy.  Only 3 of the hospital libraries are left, although some of those that disappeared were simply absorbed by the University.

We’ll start with Neal’s negatives (just so we can end with the positives!):

  • Definitely more work for the Kornhauser staff (billing, negotiations, etc.)
  • Resources didn’t always match the needs
  • What should have been a PR win (cooperation! saving money! providing resources!) often confused and raised questions.
  • Loss of hospital libraries?

Positives:

  • Really did improve access
  • More clout with the vendors (big contracts means they listened…a little)
  • Helped Kornhauser develop a better understanding of the hospital libraries (UL does not have a connected hospital)
  • Vendors could coordinate training
  • Made it easier for personnel moving between locations: the resources stayed the same!
  • More buying power
  • Allowed Kornhauser to truly fulfill its role as a Resource Library.

All in all, an excellent presentation from Neal.  This was the first time I had really heard about the down and dirty parts of forming a consortia, and it provided both a good generalizable overview with lessons learned as well as an interesting story of the long-term experiences of a specific location.  Thanks, Neal!

(For the entire presentation, visit Neal’s posted slides!)