- NancyLombardo, 08 Aug 2008

---

NOVEL Steering Committee

Thursday, January 17, evening 6:00 MST (8:00 EST) – E2, LF, Ed, NTL, KBD

Agenda:

1) Go over Pfizer grant goals (Larry)

2) Discuss Patient Portal (Pfizer goal) Give thought to how to describe these PDFs. What common descriptive elements?

3) Discuss Rare Disease database (Pfizer goal) Wiki? – Pass through authentication? Who can help us with this?

4) Discuss committee progress

5) All Star Grand Rounds

6) End of year report coming soon

7) Other - please suggest

---

NOVEL Steering Committee Meeting Minutes Thursday, January 17, 2008

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

1) Pfizer Grant – Larry Frohman, MD Review Goals:

1. Provide current educational materials to all levels of providers of health care
2. Provide quality educational resources to educators in health care, allowing them to educate others more efficiently and with better teaching materials.
3. To Provide reliable educational material on neuro-ophthalmic disease to patients, allowing them to access the appropriate health care providers as they learn more about their disease processes
4. To develop a registry of less common neuro-ophthalmic diseases, allowing us to accumulate natural history and treatment data on conditions too rare for any single institution to publish

2) Patient portal site – develop a Web area in NOVEL

• Gather PDF patient brochures from the NANOS Web site - DONE
• Index these in the NOVEL database, make them searchable - DONE
• Create patient page link on homepage – In PROGRESS – NEW DESIGN ON THE WAY
• Collect Patient Support Group information for each disease – Initial collection of links sent to Dr. Mejico
• Create links to patient materials in Medline Plus to provide high quality resources– Initial collection of links sent to Dr. Mejico
• Create links tp PubMed? searches for more advanced queries (annotate to indicate that the level of information will be much more sophisticated)
• Create searches into the NOVEL collections to retrieve related materials from the existing collections– In PROGRESS

Action: NOVEL will utilize the NANOS Patient Education committee to advise details for the Patient Portal Site. The development of more patient brochures is strongly encouraged. Contact made, Initial collection of links sent to Dr. Mejico

Action: Dr. Friedman will contact the American Headache Society regarding their patient education information.

Action: Nancy Lombardo will email Dr. Mejico to discuss patient education details. - DONE

Architecture: The patient portal will have browsing menus organized by disease. Using the metadata records in the NOVEL database, patients will also be able to search by symptom, anatomy, treatment and other specific fields.

3) Rare Disease Registry 3-5 disease states will be selected. These will be diseases that are too rare for one institution to collect significant data. All patient identifiable information will be removed from the cases before submitting. Each disease will have a “steward” assigned and that person will develop a form with the essential information elements to allow consistent data collection for each disease. The steward assigned to each disease will collect the forms as submitted. IRB approval will be investigated by each steward at their own institution Potential stewards who have responded to the email inquiry are:

• Lee: Optic Paqthway Glioma
• Odel: AION with PDES
• Bosley: Congenital eye movement abnormalities

Action: The Research Committee will coordinate the development of the rare disease forms and review the prototypes as they are developed.

Action: Dr. Eggenberger volunteered to help with the vetting of the forms.

Action: Dr. Friedman will re-send the email to membership, which was sent on Dec. 23 regarding collecting data on diseases.

4) Grant funding: the Pfizer money was given to NANOS. It was agreed that the money would be transferred to the Eccles Library to pay for NOVEL staffing.

Action: Janel Fick will forward the $80,000 funding from Pfizer to the Eccles Library. The Eccles Library will track the expenses, which will be submitted to Pfizer at the end of the year. - DONE

5) Committee reports: The Curriculum Committee has done the initial investigation of the curriculum outline as it relates to the Wray collections. Documents were submitted to Nancy Lombardo on January 17.

Action: Nancy Lombardo will work with the Curriculum Committee to review the documents, which were submitted in regards to the curriculum outline and the Wray collections. – In PROGRESS

Peer Review Committee: PR has developed some initial guidelines for criteria when reviewing materials submitted to NOVEL. Nancy Lombardo has been working with the Open Journal System and believes that it will serve as a means for online submission and peer review. The Eccles Library is in the process of upgrading to the most recent version and when that is complete and stable, the PR Committee will be asked to attend an online meeting where Nancy will demonstrate the OJS procedures. – In PROGRESS

Wiki Committee: The Wiki committee has not been active yet. Nancy Lombardo has loaded some prototype information for a possible encyclopedia, and also some foundation materials relating to NOVEL. In order to get the best system administration and support, Nancy will oversee the transfer of the information from the current MediaWiki? platform to the TWiki platform supported at the Eccles Library. After that move, the Committee can be encouraged again to actively add information. – In PROGRESS – Moved to new OS - TWiki http://library.med.utah.edu/twiki/bin/view/Novel/WebHome

Action: Janel Fick and Nancy Lombardo will work together to set up an action-item tracking matrix for NOVEL.

6) All Star Grand Rounds: Dr. Friedman has been talking with folks at Allergan about funding opportunities. There is also the possibility of talking with Ralph who has ties with AAN. He works at Dr. Friedman’s institution.

A demonstration project of 3 examples was discussed. Drs. Friedman, Digre and perhaps Dr. Miller could do their Grand Rounds presentation and add the appropriate supplementary materials.

Other funding possibilities were mentioned, including AAQ Foundation and the AAN Foundation.

7) Archives: There was a discussion of the archives. Dr. Goodwin is still interested. The Eccles Library TWiki will be available for the archives, if that platform is acceptable. Dr. Daroff has the first editions of the Walsh and Hoyt books that are signed. He is considering giving them to NANOS pending several archive issues.

Dr. Digre inquired about how the ANA archives work and where they are located.

Action: Janel Fick will talk to Lori Anderson and report back to the committee regarding the location of the ANA archives and the agreement the ANA has with the university.

Another conference call will be organized at the end of February to discuss the progress of the NOVEL committees and give updates.

Action: Janel Fick will poll the NOVEL committee and set up a conference in late February.

NOVEL will be presented to the NANOS Board in Orlando. Nancy Lombardo will not be there yet, so Dr. Digre will present what she and Nancy prepare. This will include a PPT presentation summarizing progress. Handouts will be prepared for the Board. Usage stats will be included.

Action: Janel Fick will add the NOVEL presentation to the NANOS Board agenda in March. The issue of the bridge funding that NANOS set aside for NOVEL will be discussed and there will possibly be demonstrations for the All Star Grand Rounds.

There being no further business, the meeting was adjourned.

Respectfully submitted,

Nancy Lombardo and Janel Fick