Difference: 081308 (r2 vs. r1)

1. New materials in NOVEL
2. Patient Portal
3. Rare Disease Registry

6) Committees – ? Goals, members etc

8) Other

NOVEL Steering Committee Meeting Minutes

August 13, 2008

Attending: Nancy Lombardo, Larry Frohman, Ed Fitzgibbon, Eric Eggenberger, Tony Arnold, Deb Friedman, Kathleen Digre

1) Discussion of new Web design

The new design is good, professional, but needs to be livened up with color and graphics. Some suggestions were:

• add logos or photos to the listing of collections,
• move search box up to the space where the yellow notice of the new design are now,
• have some indication of the Pfizer funding on the home page and the patient portal.

Nancy encouraged committee members to use the suggestion form to send along any other ideas they have as they come up.

2) Pfizer Goals:

Collections are growing:

• Sadun has been cataloged and the menus are nearly complete, providing access to the materials.
• There has been growth in the Wray and Moran collections
• The Patient Portal is up, based on the topics covered by the NANOS brochures
  • It was suggested that we add a large print duplicate page, have big button leading there
  • Correct the typo in Pseudotumor Cerebri
  • Add patient vocabulary synonyms to the listings
  • Investigate the multiple language brochures. Dr. Arnold will ask Dr. Mejico about those.

Dr. Arnold will also ask the Patient Education Committee, Chaired by Dr. Mejico, to develop new topic brochures.

Larry suggested asking the Curriculum committee to identify potential topics

Kathleen noted that she recently had a number of patients with Optic Nerve Glioma. We have gathers some resources on that topic, and could use a brochure.

Need 4 – 6 new topics, with volunteers to draft the brochures

3) All Star Grand Rounds

Deb is still planning to begin with one of her own grand rounds. She had hoped to use a recent grand rounds, which was scheduled to be webcast, but there was a mix up and the taping did not take place.

• ANA – Kathleen suggested talking with Ralph Josefiwicz ) about this again
• AAN – Deb will send the proposal to Eric, as he has had some communication with members there about collaborating on content.

4) JNO Archives

Nancy reported that the JNO archives are finally in her possession. Her team is currently working on OCR, indexing and loading into the database. There will soon be a new collection in NOVEL for the JNO archives. Once the archives are loaded, the quarterly issues will be added as the one year embargo passes.

5) Fund Raising

The group discussed allowing industry advertising on the site. We will have toinvestigate what industry might expect in terms of real estate on the web page. Deb will charge the Development Committee with this.

A Donation/Gift option can be added to the site. Nancy will talk with Janel about this, as it has already been done for NANOS.

Larry suggested that we investigate Google Scholar as a funding partner. He sent some information to Nancy.

6) Sub-Committees

Discussion took place on how to activate some of the sub-committees. Larry and Kathleen agreed to work with Nancy to set priorities and contact the relevant sub-committees with recommended next steps.

7) NANOS 2009 Optional Symposium

Nancy would like to propose another optional symposium for NANOS members at the next meeting. Some ideas are:

• NOVEL Update
• Wiki How-To session – teach members to use and develop NOVEL Wiki
• Current Awareness – Using tools like MyNCBI? to get more out of PubMed?, use RSS feeds to keep up with current literature, Journals, etc
• Ed agreed to work with Nancy to develop more ideas

8) NOVEL Committee status

The status of the NOVEL committee was discussed. Dr. Arnold suggested that it be made more prominent. Eric is current Chair of Web Education. Janel can make the changes on the NANOS Web site. Dr. Arnold will decide if NOVEL is its own committee or will continue to be a part of our web-education committee