Tuesday, January 31, 2012

Blogging live from the RAC -- continued

To follow along, the draft plan is at:    http://www.scribd.com/doc/79701467

The call-in number is toll-free 1-800-767-1750 and the access code is 82477# .

The full agenda provided to RAC members today is here:  https://docs.google.com/open?id=1Sas5UyjORc9Jb0mwCQxNfOfvPT1ofYQOtA5l2OytHsHm-Ve8SrgCTbTaLLZQ.


10:55 a.m. - meeting has reconvened after a break.

Discussion has moved Medical Surveillance and action plans.

Dr. Steele expresses concerns.  Big issue is "we" still don't know rates of cancers, etc. in Gulf War veterans and that isn't being monitored adequately.

Discussion moved to areas of implementation, and that so many areas were highlighted in the document as "yellow"  Dr. Steele said her working group expected that the plan was for all VA Gulf War research, not just ORD, yet only ORD and OPH (Office of Public Health) are present at today's meeting.  So, how do we get all the areas implemented?

Dr. Tim O'Leary (ORD) noted that ORD doesn't have control over many of the areas addressed in the plan.  Reminded us that RAC is advisory (only).  Original assumption was this was an ORD plan, it's now clear this has become an all-VA plan.  Noted that CofS Mr. Gingrich is very committed to this issue, ORD will make sure he and the internal VA Gulf War Task Force.  Reminded that plan doesn't constitute advice until it's approved by both RAC and NRAC.

Marguerite Knox, a GWV RAC member, noted that from her perspective still in the S. Carolina National Guard, that medical data sharing between DoD and VA has not been good.   VA staff echoed that concern.

I got a bit heated, directing my comments to Dr. Leary saying we Gulf War veterans are fed up with seeing a lack of energy on getting these things done and moved forward.  

Mr. Binns noted that this plan, while advisory, has buy-in from ORD so it's also ORD's plan.

Dr. Kupersmith (ORD Dir.):  "My interest is in getting this done."  "You want something to get done, you talk with the people responsible for getting them done and work with them."  Said RAC and NRAC cancertainly emphasize the importance of particular areas and why they're important.  Noted that this is a strategic plan -- the operational plan is something VA does internally.  The way it gets done, a strategic plan is created and approved by the appropriate entities with buy in from those who will be implementing it.  Those who will be implementing it then create the operational plan.  Operational plan is implemented with performance measures, which are then graded.

Dr. Schneidermann, (OPH), survey is the third time collecting data with this cohort of 30,000 -- half each deployed and non-deployed.  Discussed how to use this cohort to create a biorepository.

Dr. Laine, (new to the RAC; editor of Annals of Internal Medicine.)  Strikes me: a lot of playing catch-up because of earlier poor collections of data.  Missing:  Changing systems not only for Gulf War veterans but for the future.  Set up data collection prospectively, not only to better understand what happened here, but also to set up systems for doing this better in the future.

Dr. Kupersmith: Relationship with DoD is much better in recent years.

No major changes made to this section.

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