DAY ONE - Travel Day -
Friday, May 21 -
Toured NPR Library with Kee Malesky - She (and other NPR librarians) keep an internal Wiki to provide journalists and broadcasters with up-to-date info on topics of interest, arranged in a very logical and very useful web site. It is highly used and much appreciated by the NPR staff. To listen to Kee, you would think that Librarians run NPR! She was amazing. We also viewed the music library and its archives. They have hired three new librarians just for digital archiving and are in the process of converting all their transcripts (as well as all their reels and tapes and cds dating back to the beginning of NPR in 1971) eventually to digital media on servers.
My AHA moment was when we we standing around Kee Malesky's office and she had an incoming call from Scott Simon (on her caller id) that she ignored to continue talking to us!
Saturday, May 22 -
Attended all day symposium on "E-patients: the technocultural revolution of health consumers". Have handouts and web links to sites and info from the day. Speakers included "Librarians in the trenches" - people who have developed electronic systems to interface with medical records such as My Health E Vet and CPRS electronic system as well as Vanderbilt's system (article to be published in July JMLA); then a very emotional session called "consumers in the trenches" that focused on two people "epatient Dave, who survived kidney cancer by doing research on his own disease and advocating for his own care and a famous medical rights advocate named Regina Holliday who is an artist who has painted murals and has also done the cover art for BMJ and other international journals after her husband died of cancer after a horrible experience with medical records and the medical system in DC.
The afternoon session included Q & A and vendor demos of different future integrated systems, including the connection between Medline Plus and some medical records systems where the ICD codes will be used to link to Medline Plus terms.
• avoiding pitfalls - better health literary skills needed - how to search; how to communicate with physician
• better training of health care professionals
• better health website design; testing on real users with mixed literacy skills
• Vanderbilt EMR - evidence provision within; My Health at Vanderbilt - 110,000 users; mostly female
Epatient Dave - www.participatoryMedicine.org Society for participatory medicine; Caringbridge.org
Regina Holliday - BMJ Sept 12, 2009 cover. 73 cents - mural on wall on Connecticut AVE