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- NancyLombardo, 08 Aug 2008


NOVEL Steering Committee February 27, 2008

Agenda:

1) Review minutes from January 17, 2008 meeting

2) Review progress – NEW - Sadun Collection in process

3) Patient Portal PDF patient brochures from NANOS Web site have been indexed in NOVEL. Dr. Mejico contacted by email: Patient Portal link collections have sent to Dr. Mejico for review by Pat Ed Committee: Resources targeted: Pubmed MeSH? search, Medline Plus search, Support Groups, other national institutes, other reliable resource site links

4) Rare Disease Registry – Larry and Deb five voting, one deferred, 5-4-3-2-1 point system.

  1. Susacs (24 points, Egan)
  2. Autoimmune Optic Neuropathy (17 points, Frohman)
  3. Posterior cortical atrophy (9 points, Pelak)
  4. Chiari mimicking PC (? who, 8 points)
  5. Sarcoid (El Dairi- {7 points, a fellow} )

5) Pfizer Grand funds transferred to Eccles Library Position posted – Not filled yet

6) Committee Reports:

Curriculum Committee NOVEL Team has reviewed docs sent by Dr. Biousse, added subjects in Wray collection Currently reviewing the Curriculum outline, comparing outline terms to subjects in collections

Peer Review Committee Will demonstrate the OJS system to the PR Committee soon. - online submission - online review of those submissions.

Wiki Committee - Not active yet Not active yet, Have moved to new platform, TWiki. Need to do some configuration to expose pages to public. Hope to be ready by NANOS.

7) All Star Grand Rounds: Update

8) Archives: Update

9) Meeting at NANOS about AAO using NOVEL content Monday at 4:30 p.m. (directly after the presentation) in the Hinalea Room, which is on the 2nd floor.


NOVEL Steering Committee Minutes February 27, 2008

Attending: Drs. Larry Frohman, Eric Eggenberger, Ed FitzGibbon?, Kathleen Digre, Preston Calvert, and Janel Fick, Lori Peterson, Nancy Lombardo.

1) Reviewed minutes from January 17, 2008 meeting

2) Reviewed recent collection progress – NEW – Alfredo A. Sadun of USC has contributed his “100 Best Lectures” series. These lectures in PPT format are being converted to PDF format and indexed as a separate collection. These are being indexed by Ken Rockwell, a professional Original Cataloger at the Marriott Library (main library at U of U.) The Web site is under development and can be viewed in its preliminary state at: http://library.med.utah.edu/NOVEL/Sadun/ . Menus will be prepared soon for browsing the collection.

3) Patient Portal is under construction – The 14 patient information brochures linked on the NANOS Web site have been added to the NOVEL database and indexed. A collection of resources for each disease state has been prepared, off-line and sent to Dr. Mejico, Chair of the Patient Education Committee. The request was made to have the PE Committee review the links and make suggestions for alternatives or additions. The resources targeted for each disease are: Pubmed MeSH? search, Medline Plus Medical Encyclopedia search for consumer information, Support Groups, other national institutes, other authoritative resource site links. The NOVEL team will wait to hear back from the PE Committee. Meanwhile, a Patient Portal mock-up will be developed based on the new design for the NOVEL Web site.

4) Rare Disease Registry Discussion

There was discussion of topics for the rare disease registry. It was decided to begin with 6 topics, knowing that one or two might not be successful. The plan is to identify the six disease stewards listed below and task them with creating data collection forms for their disease. IRB approval for the data collection will be obtained by the stewards at their location. The forms will be available on the Web, but will be collected by the stewards. As IRB approval is accomplished, best practices and tips will be posted to the Web to assist others in gaining approval. The topics identified are:

  1. Susac’s (24 points, Egan)
  2. Autoimmune Optic Neuropathy (17 points, Frohman)
  3. Posterior cortical atrophy (9 points, Pelak)
  4. Chiari mimicking PC (? who, 8 points) Vaphiades— Eric Eggenberger will check with him about his interest
  5. Genetic eye movement disorder (8, Bosley)
  6. Sarcoid (El Dairi- {7 points, a fellow} ) Larry Frohman will check with fellow to ascertain interest and co-chair this group

5) Pfizer Grant: The funds have been transferred to the Eccles Library. Nancy Lombardo is receiving 25% of her salary through these funds. Ray Balhorn, the NOVEL video technician and animator is being paid until June 30 from these funds. Another half time Web developer/designer position has been posted, but is not yet filled. If not filled by the next NOVEL Steering Committee meeting, a telecommuting position will be considered to widen the market.

6) Committee progress was reported:

Curriculum Committee NOVEL Team has reviewed documents sent by Dr. Biousse, Chair of the Curriculum Committee. The committee began by analyzing the subject keywords in the Wray collection and identifying where they match with the Curriculum Outline. The NOVEL team has added subject keywords as needed in the Wray collection. Further analysis of the Curriculum outline was done by Katherine Pasker, NOVEL assistant. Katherine compared an all fields keyword search to a subject field only search on every item in the outline. She created a spreadsheet with the number of results for each. Decisions about construction of the queries in the Curriculum outline will be made by the Curr Comm (all fields-broad vs subject only-narrow.) Nancy Lombardo believes the approach should be for the narrower search, as the advanced search function allows all NOVEL users to search all fields, or any fields at their discretion.

Peer Review Committee Nancy Lombardo has investigated the Open Journal System (OJS), an open source journal management and electronic publishing software created by the University of British Columbia and distributed by the Public Knowledge Project. OJS will begin to serve as the NOVEL online submission mechanism and as the online peer review infrastructure for online submissions. Nancy will demonstrate the OJS system to Leah Levy, Chair of the Peer Review Committee, Friday, Feb 29. If agreed at that time, the online submission link will be directed to the OJS author submission page. Training of the rest of the PR Committee will follow.

The OJS is available for author registration at this time: http://ojs.med.utah.edu/

Wiki Committee The Wiki committee has not been asked to take active role yet. However, progress has been made. Nancy has moved the NOVEL Wiki to a new platform, TWiki. The new NOVEL Wiki can be found at: http://library.med.utah.edu/twiki/bin/view/Novel/

Some content has been entered into the Wiki. Preston suggested that the Wiki Committee be asked to consider the structure and organization of the Wiki this year. This planning can be followed by a training session for Committee members and others interested at the NANOS 2009 meeting. Nancy agreed that this is a great plan. She suggested that a hands-on training can be provided at that meeting and is willing to organize that session. Nancy will contact Dr. Jason Barton, who agreed some months ago to Chair the Wiki committee. She will determine if he is ready to proceed with this plan.

7) All Star Grand Rounds: Update from Deb All Star Grand rounds report: I submitted a grant application to Allergan a few weeks ago though their official grant site. I asked for about $150K but said that we would take $25K to start with if that’s all they could do (that’s the advice I got from inside resource). I still think that we should be working on development for this more aggressively if we want to pursue it (which is Preston’s charge officially).

8) Archives: A discussion of the archives project took place. Dr. Goodwin is Chair of the Archives Committee, but is uncertain how to begin work on a project. Preston and Ed have offered to assist in planning an approach. Nancy is interested in helping with this effort. Preston will email Dr. Goodwin to see about meeting in Orlando to discuss the project. Nancy suggested the possibility of starting with the photograph collection, if it exists, which would be draw interest and make a fun starting place. The photos can be sent to Utah for scanning and put in a NOVEL collection. Other “threads” in the archives can be identified and prioritized for digitizing as appropriate.

9) Meeting at NANOS about AAO using NOVEL content A reminder was given regarding the meeting on Monday with Karl Golnik of AAO. The meeting is at 4:30 p.m. (directly after the presentation) in the Hinalea Room, which is on the 2nd floor. Nancy, Larry, and Kathleen will be attending. Janel is investigating whether Lanning Kline has been invited. This is a preliminary discussion.

10) Larry requested that an agenda item be added to the NANOS Board meeting to discuss the formalizing of a budget of $20K for NOVEL any year when grant funds are not available. Janel will add the item to the agenda. Kathleen will be representing NOVEL at the Board meeting for the formal presentation.

11) Nancy will send Janel the handouts for the Board meeting asap

12) Janel is arranging a table for NOVEL which will be outside the main meeting room at the conference. There will be a poster board and wireless available for NOVEL demonstrations and discussion. Nancy will attend the table at these times: Sunday: Breakfast, morning break, lunch, end of meeting Monday and Tuesday: Breakfast, morning break, lunch

13) Next meeting will be determined at the NANOS meeting or after.

 

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Topic revision: r1 - 08 Aug 2008 - 11:39:23 - NancyLombardo
 

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