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*NOVEL Steering Committee Meeting*

*August 18, 2009*

*Present:  Frohman, Friedman, Calvert, Arnold, Eggenberger, Lombardo, Digre*

*1) Patient portal discussion* – 
Luis Mejico reported that 6 new topics brochures are just about ready. The Patient Ed committee is reviewing those completed and will share them with NOVEL as they are completed for the NANOS Web site. The four language translations in French, German, Spanish and Hebrew are ready on the NANOS Web site and will be harvested for NOVEL and added to the Patient Portal.

*2) Rare Disease Registry* – 
NOVEL has added Unusual Congential Ocular Motility Disorders (Bosley) but it needs final approval. Dr. Bosley is in Saudi Arabia now. Larry will ask if he is still able to be the steward collection the instruments on that topic. Kathleen will ask Mike Brodsky to review it. 

In July, Larry received a draft on the sarcoid data collection that required major revisions and he sent it back with extensive suggestions. 

*3) All Star Grand Rounds* – 
look at the ManyOne Web site Prototype: http://www.manyone.net/NOVEL/articles/view/137051/?topic=17616
The ManyOne prototype was briefly reviewed. There was some agreement that the general layout is good. We’re not sure about pursuing the ManyOne connection, as they may not make it. Nancy noted that we can pretty easily produce a similar layout and interactivity on the library Wiki so that could be the alternative. There was some appeal to the ManyOne/Digital Universe idea of open access to scientific information, but if they are going to fold it may not be worth it.  We will use it for now as a prototype and add the video component to it.  

All of the materials of the talk (video, PPT, lecture document) were catalogued in NOVEL last year and are retrievable via a search on the topic, or the author’s name.

*4) Collection overview and next steps* -
The move of the server went well and the database is back up. We briefly discussed the collections. Larry will look into the availability of the Ron Burde collection, currently held at Albert Einstein. The questions there are: Will the institution release the collection, will the family release the collection, is there anyone willing to prioritize it so we can get only the relevant, meaningful material for adding to NOVEL.

Daroff’s collection needs brief descriptions for each clip. One or two succinct descriptive sentences would really enhance searching for users. Kathleen will ask Dr. Daroff if he has someone willing to review and write the short descriptions. If not, Eric may have folks who could help.
 - Kennerdell under peer review – need to complete
 -  Sadun – needs peer review
 - Daroff – Peer review – metadata – Need paragraph description to assist searching
 - Wilhelm – In progress – 
 - Newman-Toker – in progress
 - Winterkorn – in planning
 - Wray and Moran – Ongoing – nearing completion
 - Kardon – Get more material!
 
 
*5) AAO Discussion* – 
Tony explained that he had been in discussion with AAO folks regarding possible use of NOVEL resources in The One site at AAO. They are under new direction and there is renewed interest in using NOVEL video, particularly, within The One site. He has a conference call on Thursday and wanted to get some feedback before that meeting. 

We discussed “ownership” and the fact that most of the video remain copyrighted by the contributors, so would require permission for any use outside of NOVEL. If royalties were given to NOVEL, the contributors might be willing to share, but would have to be asked. Nancy is willing to make that request if it seems appropriate based on the discussions with AAO.

We discussed the “added value” of NOVEL, which are primarily:
•	Organization of the collections, with the database to provide searchability
•	Video production – clips have been meticulously edited and compressed so that they are very high quality, considering many of the original source material (were long, poor quality tapes, now short, meaningful edited clips of high digital quality.)

We discussed the possibility of restricting NOVEL. This is not easy in the current technology configuration. The way our collections are organized and spread over so many different technology platforms (Web interface, CDM Database, Video server, Web file server) would require a fairly significant re-structuring to lock things down. Nancy will investigate further. Even if we locked down the Web interface, the items can be found in Google (thanks to concerted effort by the NOVEL team to employ the “Open Access” model.) Each technology “venue” would have to be restricted, requiring some programming to allow pass through of passwords, or some other means of discerning who the user is and if they can access the next step of the site.
 
*6) Funding* -
Larry has been in communication with the Development Committee. He stated that it is impossible for him to seek and submit grants without further assistance. Kathleen and Nancy have much content for grant writing, but identifying potential sources, customizing and assembling the grants and preparing budgets can be very time consuming. It would be useful to assemble a team of NANOS members to work on grant writing.

We are currently awaiting grants from Allergan and Pfizer

Tony is working on a development committee—for grant writing.

*7) Other* -
Nancy is able to take advantage of students and staff at the library and we are making progress with basic collection growth (particularly Walsh, Wray and Moran). Collections are growing, material is being scanned, indexed and added to the collections. 



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- Main.NancyLombardo, 19 Aug 2009
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Topic revision: r1 - 19 Aug 2009 - 16:40:36 - NancyLombardo
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