Widen the Lens on Research: A Report of Paul Harris’ Plenary Session on Informatics in Support of Research

October 28, 2014 at 11:29 am | Posted in NAHSL Annual Meeting 2014, Professional Development | Leave a comment

One of the sessions I was most excited about attending at the NAHSL 2014 Annual Meeting in Rockport, ME was the one given by Paul Harris.  In September-November of 2013, I participated in a Massive Open Online Course (MOOC) offered by Vanderbilt called “Data Management for Clinical Research”.  Paul Harris was one of the presenters, and I found the class to be well organized, offering lots of opportunities for hands on practice, and a lot of fun.  The third round of this course runs from October 27 through December 1st, and I highly recommend it.  Paul is incredibly likeable and makes you feel that you too can accomplish amazing feats of informatics wizardry if only you work hard and communicate well.  His aptitude and brilliance, he tactfully leaves out.

His brilliance was abundantly on display at NAHSL as he described the many, many projects he and his Office of Research Informatics team at Vanderbilt have created or are working on.  For starters there is the Research Electronic Data Capture (REDCap) application that he developed to manage what he calls “Small Data”.  Researchers can build forms, collect data and run reports all within a HIPAA-compliant platform.  The application is free to non-profit institutional partners and can be used for many different kinds of data.  REDCap currently has over 1200 institutional partners, with more joining every day.

Big Data, or the secondary use of clinical data, is more complicated.  This involves mining data from multiple EHRs, none of whom talk to each other, as well as data from repositories of blood and tissue samples.  There are infrastructure issues of where to store data and levels of access depending on whether data is identifiable, or de-identified.  These projects call for the big guns: natural language processing, pattern recognition and machine learning.

Whence cometh this clinical data?  Vanderbilt has a custom-built electronic health record system called StarPanel.  Then there is their BioVU respository which contains de-identified DNA extracted from blood left over from clinical tests (with patient permission).  Another repository, which is in process, is PathLink.  Data from these pathology samples will be discoverable as either identified or de-identified information and linked to local medical record databases.

In the cause of linking things with other things, the Office of Research Informatics has also created IRBshare.   This tool has the very practical objective of streamlining IRB proposals for multi-center studies.  Formerly, each institution had to submit a separate IRB application for the same project which was a huge duplication of effort.

ResearchMatch is another project his team is working on, and Paul would welcome interest from librarians at other institutions.  The purpose of this free and secure registry is to link people interested in participating in clinical trials with researchers looking for participants.  Stitching all these tools together is Vanderbilt’s StarBRITE which is a portal for researchers in the Vanderbilt Institute for Clinical and Translational Research.

While we can’t all have the mind and vision of Paul Harris, he did leave us with lists of lessons learned in his various projects.  Many of these would translate equally well to the library and library projects.  Here, in no particular order, are some of his guiding principles:

  1. Listen to research end users, then use their input to evolve
  2. Manage expectations – under promise, over deliver
  3. Promote, promote, re-promote
  4. Start with a good idea
  5. Be opportunistic
  6. Choose partners carefully
  7. Remember that the technology is the easy part
  8. Leverage earned trust
  9. Anticipate issues and problems
  10. Be respectful
  11. Listen and be diplomatic
  12. Measure as you go
  13. Start small, test and evolve

Jennifer Miglus, HMS Librarian
Information and Education Services Dept.
Lyman Maynard Stowe Library
UConn Health
Farmington, CT  06034-4003
(860) 679-3200
miglus@uchc.edu

 

 

 

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