CDC's 10 Public Engagement Meetings Set

thanks, I was going to post a diary

Important to sign up asap, for those who can attend, cos places are limited.



All 'safety concerns' are hypothetical.  If not, they'd be called side effects...

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by: SusanC @ Sat Aug 01, 2009 at 14:52:32 PM CDT

Flu Meeting in Lincoln NE

I am signed up for the meeting in Lincoln.

I would be happy to take a list of questions with me, from those who can't make a meeting -- I will also post a summary afterwards.  

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by: elint6000 @ Sun Aug 02, 2009 at 19:33:44 PM CDT

[ Parent ]

Web dialogue at end of August

H1N1 Public Engagement WebDialogue

If you are unable to attend a meeting in person, you can make your voice heard through the H1N1 web dialogue at the end of August hosted by WestEd. Please check back for more information.

The above link works if you take off the period, or just use this one:
http://www.keystone.org/H1N1  

"The truth does not change according to our ability to stomach it."  Flannery O'Connor

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by: Jane @ Sun Aug 02, 2009 at 15:18:13 PM CDT

Attending Aug 8 in Denver

If you want any questions asked at this conferenc please just put on this thread atten: FluMom.  I will be happy to ask questions you want to ask the CDC about the H1N1 Vaccine program.

This seems to be specific to how the CDC will distribute the Vaccine.

I am going to listen, learn and then ask questions.  I will be taking notes and will transcribe them and put them up here. If they have any handouts I will also try and post them here also.

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by: FluMom @ Sun Aug 02, 2009 at 23:37:36 PM CDT

Attending Aug 15 in Sacramento

I plan to talk with a number of the faith-based organizations (FBOs) and community-based organizations (CBOs) I work with to get their ideas, suggestions and concerns so I can relay them to TPTB at the meeting.  On such short notice, it is very hard for representatives from these groups to make their way to Sacramento; the farther they are from the capitol the harder it becomes.

I also agree that this seems to be a rubber-stamping process or at best, a way to hear some concerns.  It is not a planning or strategy meeting among equal partners, but it was not set up for that.

Thanks Into The Woods for the review of other such "public engagement" processes.  In case I am being too subtle, I have a real problem with this methodology that TPTB seem so excited about and proud of.

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by: drd1106 @ Wed Aug 05, 2009 at 13:53:11 PM CDT

[ Parent ]

don't underestimate the power

of such events.  They have protocols where they take down the opinions and these all have to be collected and counted.  Many important decisions still need to be made, and whether those decisions go one way or the other, will depend to a significant extent on public attitudes.  At least that is the theme that emerged again and again, in the discussions I've attended.

Also, I'm working on a synopsis of vaccination issues as they stand, for the US right now.  The kind of issues that may come up for discussion, and some background information so that you all can arrive a little better prepared.  I hope to get it done today or tomorrow.  



All 'safety concerns' are hypothetical.  If not, they'd be called side effects...

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by: SusanC @ Wed Aug 05, 2009 at 14:27:57 PM CDT

[ Parent ]

Synopsis of Vaccination Issues would be GREAT!

I was planning to do something similar, but overwhelmed right now.  I would really appreciate that, Susan C!!!  I can then send it to my network and try to get their feedback before I go.

As always, your analysis is so helpful!!!

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by: drd1106 @ Wed Aug 05, 2009 at 14:34:15 PM CDT

[ Parent ]

done

here http://www.newfluwiki2.com/sho...

This was the shortest I could make it!!



All 'safety concerns' are hypothetical.  If not, they'd be called side effects...

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by: SusanC @ Fri Aug 07, 2009 at 02:18:26 AM CDT

[ Parent ]

heads up for those going to the meetings

the diary is written in headings and bullet points according to the rational organization of the information, but there are many important issues and points in the bullets that are not possible to highlight.  Also, because the information is so truncated (for brevity) it's easy to miss even major important issues.

I would suggest that you consider printing out the page and highlighting or making notes for issues that are important for you, to create a quick reference for yourself at the meeting.  As you can see from the length of that 'summary', the issues are many and complicated, so don't expect yourself to be able to remember them from memory.

Hope this is a helpful hint, and thanks for making the effort to attend!!  ;-D



All 'safety concerns' are hypothetical.  If not, they'd be called side effects...

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by: SusanC @ Fri Aug 07, 2009 at 12:36:47 PM CDT

[ Parent ]

let me put the link up again

for newbies who may have missed it - Mass Vaccination against Swine Flu H1N1 in the US, a summary of the issues and considerations of this vaccination campaign against novel H1N1 in the fall.



All 'safety concerns' are hypothetical.  If not, they'd be called side effects...

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by: SusanC @ Mon Aug 10, 2009 at 10:45:04 AM CDT

[ Parent ]

Previous PEM by Keystone on Community Control Measures

In hopes that we won't spend too much time re-inventing the wheel, instead of modifying it to carry the load of this particular pandemic virus, some background might be useful.
Here's just a start, highlighting some of the previous 'citizen engagement' efforts:

Some previous discussions on the issue of Vaccine Prioritization:

CDC Requesting Public Comment on Vaccine Prioritization (December 2006)
http://www.newfluwiki2.com/sho...

Vaccine Prioritization Discussion (2007 Stakeholder Meeting)
http://www.newfluwiki2.com/sho...

Guidance on Allocating and Targeting Pandemic Influenza Vaccine (July 2008)
http://www.newfluwiki2.com/sho...

And back when community control measures were considered worth discussing by the government, a similar series of public engagement meetings took place on that issue, conducted on behalf of the CDC and Association of State and Territorial Health Officials (ASTHO).

ASTHO Roundtable Summaries ( July 2007)
http://www.newfluwiki2.com/sho...

This diary by SusanC discusses the ASTHO/CDC Draft Interim Report  - Findings From Citizen Deliberation Days in Atlanta GA, Lincoln NE, Seattle WA, Syracuse NY. (Dec 2006)

http://www.newfluwiki2.com/sho...

The difficult decisions about the nature and timing of community control measures after the appearance of pandemic influenza led the Coordinating Center for Infectious Diseases at the Centers for Disease Control and Prevention (CDC) to sign a cooperative agreement in 2006 with the Association of State and Territorial Health Officials (ASTHO) to engage the citizen and stakeholder publics. The main goals of the project, entitled the "Public Engagement Project on Community Control Measures for Pandemic Influenza", were to learn what level of support the public might have and what tradeoffs they might be willing to make for a package of control measures that would be socially disruptive but have the potential to slow the spread of disease. The Public Engagement Project ultimately enlisted the collaboration of 11 other organizations, and ASTHO contracted with the Keystone Center in the fall of 2006 to assist with implementation of the project.

The design of the project was modeled after the Public Engagement Pilot Project on Pandemic Influenza (PEPPPI) conducted in 2005 on the question of who should be vaccinated first in the early days on an influenza pandemic when vaccine supplies are still limited. This model seeks to recruit approximately 100 citizens-at-large from the four major regions of the United States and a separate panel of representatives from organizations most affected by the policy decisions (stakeholders). The citizens-at-large produce their perspective on the question of interest and the panel of stakeholders meets at the end of the citizen deliberations to integrate the findings from these deliberations and to produce a final report reflecting the best thinking of both groups and the "societal perspective" on the question of interest.

This document is an interim report on the findings from the first part of the Public Engagement Project involving the citizens-at-large deliberations. The final report will be prepared after the meeting of the stakeholder representatives.

A couple of years ago, respected entities were highlighting the need for this kind of community engagement (and Flublogia's potential to aid that effort.)

CIDRAP: Community Engagement - Grass Roots and Net Roots
http://www.newfluwiki2.com/sho...

ITW(Joel J)
Courage is resistance to fear, mastery of fear - not absence of fear.
- Mark Twain
 

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by: Into The Woods @ Mon Aug 03, 2009 at 12:24:52 PM CDT

Thank You Into The Woods

I appreciate your work however, I realize that the Government is beating a dead horse on this subject.  I have been in politics and government and know this group/government already has decided how they will distribute the vaccine.  What they are doing by holding all of these meetings is to see how much resistance and or problems they may encounter with their decisions.

Another benefit of these types of meetings is to try and get approval or convince people to approve their model.  

I am going to listen, learn and ask questions.  If you or anyone else has a question in regard to distribution of vaccine I would be happy to try and get it answered.

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by: FluMom @ Mon Aug 03, 2009 at 16:35:25 PM CDT

[ Parent ]

Vaccine Distribution

I agree that the priorities have probably already been established.

But for exploring the nitty gritty of 'how' to distribute a vaccine that will be 'rationed' first by category and then withing those categories, I believe that this kind of discussion can actually be very useful, because folks outside the regular circles will bring a real-life perspective that often goes unacknowledged and unplanned for otherwise.

Many of those real-life challenges were brought up in the previous conversations both about vaccines and about community measures, so I hope they won't be reinventing the wheel.

I also agree that a portion of the value in these discussions is guaging public reaction and engaging in public education.  

Both worthy goals in and of themselves.

Thanks for taking time to attend and for the offer to accept suggestions on questions.  

ITW(Joel J)
Courage is resistance to fear, mastery of fear - not absence of fear.
- Mark Twain
 

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by: Into The Woods @ Tue Aug 04, 2009 at 15:36:04 PM CDT

[ Parent ]

FluMom, the most important thing you can do

is to turn up and tell the rest of the audience what you know, what you think, and why.  The outcome is not completely pre-ordained, cos they DO have to accurately record the opinions of those present, and those opinions, as we have seen with the Community Mitigation engagements in 2006, CAN be shaped.  

So if you have an opinion, be sure you speak up!

And thanks for your efforts.



All 'safety concerns' are hypothetical.  If not, they'd be called side effects...

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by: SusanC @ Fri Aug 07, 2009 at 23:58:21 PM CDT

[ Parent ]

Bucks County, PA Location-

I am going to try and make this one. Making no promises, as this is right before DD goes to college for the first time. This is my 'home turf', where I grew up.

I'll be happy to take any questions with me, as well and would love to meet up with any fellow Pennsylvanians who would also like to attend! -k

www.EmergencyHomePreparation.org -- A 'card-catalog' style of prepping information.   -

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by: Readymom @ Fri Aug 07, 2009 at 08:40:01 AM CDT

have to sign up for it first n/t

All 'safety concerns' are hypothetical.  If not, they'd be called side effects...

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by: SusanC @ Fri Aug 07, 2009 at 11:34:15 AM CDT

[ Parent ]

:(

I can't make this meeting. Family obligations are keeping me home. If anyone goes, I'll be waiting to hear how it went. -k

www.EmergencyHomePreparation.org -- A 'card-catalog' style of prepping information.   -

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by: Readymom @ Fri Aug 21, 2009 at 20:26:36 PM CDT

[ Parent ]

Publicity in your area re Community Engagement Mtgs?

This info was deeply buried, so I don't know how people will find out about these meetings.

I'm curious if folks are hearing anything about these meetings other than through the specialized sources like here at FW.

Anyone hearing radio ads or seeing anything on print or on TV?

There is a difference between 'engagement' and hooking up on the fly for a one-night stand.

Wondering which they are after here?  

ITW(Joel J)
Courage is resistance to fear, mastery of fear - not absence of fear.
- Mark Twain
 

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by: Into The Woods @ Fri Aug 07, 2009 at 15:15:35 PM CDT

The "Public" will not be "Engaged"

I first heard about them on the NVAC conference call July 27th.  At that time, none of the dates were set.  I just kept surfing the web and I think it was noted one day on the pandemicflu.gov site.  I tried finding the link a few days later and it was gone.  I just starting googling and found it again.

The "public" will not be fully engaged.  I acccept SusanC's point that they will listen to what comes out of these sessions, but my concern is that the audience will be stacked in favor of those who are known by the CDC and Keystone Group.  When I registered I made a comment in the comment section and someone from Keystone got back to me asking how I thought more CBOs and FBOs should be notified about the meeting (the meeting in Sacramento).  NOT AN ENCOURAGING SIGN!!  Don't take me wrong, I am glad they are open to suggestions, but the meetings are being held at the last minute which makes it even more difficult for FBOs, CBOs and other nonprofits to attend (especially if they don't live in the venue city).

I have had longstanding concerns about their "public engagement" methodology.  It is a very "top-down" and who-ever-happens-to-find-out-about-it process.  But then monies have not been made available for bottom-up processes; processes that start on the local level, expand to a regional intra-state level, state level, regional (intra country) level, then national level.  There are sucessful models for this kind of organizing as well.

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by: drd1106 @ Fri Aug 07, 2009 at 17:58:04 PM CDT

[ Parent ]

I have similar concerns

my concern is that the audience will be stacked in favor of those who are known by the CDC and Keystone Group.

about audience selection.  2 previous Keystone public engagement activities were similarly obscure in how exactly they chose the audience, especially the one with ASTHO on 'AT risk population', that resulted in the guidance that we discussed here.  I wrote to ASTHO asking them how exactly they chose the audience.  It turns out, as far as I can tell from their not very clear response, that there was a group of people who were hearing-impaired, but the bulk of the 'stakeholders' in those exercises were people from institutions that worked with at risk populations, including many from government agencies and NGOs, rather than at risk populations themselves!  There were certainly no children/parent representatives apart from someone from the Feds.  On further enquiry, they (this is ASTHO, not Keystone) at first promised to send me their documentation for the methodology of that study, but then later said they couldn't provide me with it.

Now, that may not be a reflection of Keystone, rather the agencies (ASTHO and CDC) or parts of those agencies involved in that particular issue.  Still your point is valid, that until the day they widely publicize, well ahead of time, such engagement efforts, it will be a case of which interest group gets informed and which not.

I say this with all seriousness, because this is the second time that a public engagement exercise from NVAC that came to my attention, that when I asked to be informed when they are ready to roll it out, I never got any response.  In fact, with this one, I actually asked only a couple of weeks ago, when they should already have all details, but still the answer that I got was ambiguous, noncommital, and I got a sense that they were not very interested in me informing the kind of people that I talk to, at all.

But then, of course, by now my opinion about certain vaccine issues (as my opinion about whether children are at risk) is widely known to relevant parties.  Which probably makes it even more important that those who share similar concerns make a BIG effort to be present, in such events.  



All 'safety concerns' are hypothetical.  If not, they'd be called side effects...

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by: SusanC @ Fri Aug 07, 2009 at 23:37:17 PM CDT

[ Parent ]

with all that in mind

I will also say that the person from NVAC I spoke to, appeared to be very keen that everyone should get 2 doses of vaccine instead of 1.  Now if the information is presented in such a way such that more of the paricipants are adamant they (or their kids) should get 2 doses, and if the consequences of 2 doses (ie insufficient vaccine, hence let's use adjuvants) are not clearly explained, you can see what it can lead to.  Which is what gave me the red flag about the 2 doses vs 1 issue, because this was in conflict with the expert advice and recommendation from the NBSB , that clearly stated they believe 1 dose should be enough, and that an H1N1 vaccine should be highly immunogenic (and therefore unlikely to need adjuvants!).  

Those of you going to these meetings, I would suggest that you read and print out the experts opinion from the NBSB that I quoted, in this diary, http://www.newfluwiki2.com/sho...  Print the original document from the link 'summary of expert opinions', cos it includes the names of people who wrote that opinion.  There may come a point where it would be useful to wave that bit of paper and quote from it.



All 'safety concerns' are hypothetical.  If not, they'd be called side effects...

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by: SusanC @ Fri Aug 07, 2009 at 23:47:45 PM CDT

[ Parent ]

that same official from NVAC

on a different occasion, when I told him about the 'red flag' from MF59 (a very disproportionately high incidence of adverse events reported by non-elderly vs elderly, see this diary http://www.newfluwiki2.com/dia... ), was a) surprised, which means he didn't know about it, but b) hastily turned me down when I offered to send him the paper where that information was reported.  In other words, he didn't want to know, or didn't want to be on the record of being aware of the problem!!

I may still send him the paper; I just never got round to doing it!!



All 'safety concerns' are hypothetical.  If not, they'd be called side effects...

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by: SusanC @ Sat Aug 08, 2009 at 00:03:37 AM CDT

[ Parent ]

summary of Lincoln Ne CDC Public Engagement Meeting

I attended the meeting today in Lincoln. Ann Schuchat, the Director of the National Center for Immunization & Respiratory Diseases,(NCIRD) was there and presented an overview, answered many technical questions, and was interviewed by at least 2 local (Lincoln & Omaha) TV stations.
There were approximately 170+ individuals registered, of which about 120-130 showed up, and 114 were still in attendance by the end of the day (I know the end number because of  a 'real time' poll we took near the end - which counted the number of respondants (we used clickers) and gave us the results immediately.   We were in tables of 10 for the discussions.  I have scanned &  e-mailed the agenda and discussion question handout to SusanC.

1st 1/2 hr or so was a video presentation (webvideo) by Beth Bell (Assoc Dir, NCIRD) summarizing info and the current situation on H1N1. (info stated to be current as of July 24th). After the video, the question was asked whether the video would be available on the CDC or other website --
the Keystone people were very hesitant to say yes -- their response was that the info was current but may not stay that way, so they were hesitant to post it to the public (?????)  -- they stated the video was prepared so all 10 cities had the same intro -- they had not considered a use for it beyond that --
(so, probably NOT).

Question asked about tamiflu resistance --
answer was 'assume virus NOT Tamiflu resistant.  However,  
Ms. Schuchat did state they have recently had 2 cases of tamiflu resistant virus found in the US - both in patients that were hospitalized and on long-term tamiflu use for other purposes.

question on why Lincoln was chosen - answer, 1 city in each of the 10 HHS regions - also wanted a city where they had good contacts, could organize things fcr them quickly - so, Lincoln. (our Lancaster County Public Health people have been in the front ranks in preparedness the last few years, including the bird flu meetings in 2006).

Question asked of if we have stopped testing, how do we know it is not mutating?  No answer given -- only local health people present at this time, no CDC, and they said they didn't know....

Question asked on voluntary vs required immunization -- very vehement answer that it would be voluntary.

There were a variety of interests represented --  many health professionals, a few university people, a fairly large number of retired people, a few anti-immunization anti government people, a number of emergency preparedness people representing their businesses, and a significant number of individuals who were there because they individually were interested in more info and had children or were associated with youth programs.  

They gave attendees a pre-test and a posttest - check knowledge of H1N1 before and after, attitudes before and after.

The discussion question was what type of implementation planning strategy should the US adopt against the  Novel N1H1 virus?   1) Go Easy - expect low demand, provide few extra sites, slight increase in communication, monitoring, partnerships etc.  2) Moderate - promote vaccination for eligible groups (the ACIP recommended target groups), and vaccinate them relatively quickly. 3) Full Throttle approach - significant additional federal funds, numerous vaccination sites, extensive PR activities, etc.

The Assumptions they wanted us to use were as follows:
1) severity will be the same as that seen in this spring.
(they did not want to talk about any increased severity assumptions).
2. Safety of the new vaccine would be similar to similar seasonal vaccines. NOTE: Ms. Schuchat stated that the current plans were for the unadjuvanted vaccine ONLY -
but that they were keeping the option of adjuvanted vaccines 'in their back pocket'.  Whe asked if that info on the planned use of unadjuvanted vaccine only would be posted on the CDC website, so as to alleviate many people's concerns, she demurred -- and said they will retain their EAU authority. My read on this was that if everything goes perfectly and timely in the vaccine production, they won't use adjuvants; but if the 2nd wave strikes faster, or is more severe, or delays/complications arise in trying to use unadjuvanted virus -- they will utilize the EUA process and will use adjuvanted viruses.
3. Supply available in October, but full availability of vaccine for the (planned) 2 doses not available until February 2010.  Recommendation of getting 1st does ASAP, 2nd dose 3 weeks after the 1st, and full protection assumed to accrue 2 weeks after that ( 5 week time period total).  
4. Cost - paid in full by the Feds, made available on a per-capita basis
5. Vaccine Recommendations: 5 subgroups ( see ACIP recommendations) 1st priority.
6.  Overlap of availability of both vaaccines (seasonal & Novel H1N1)  Will give seasonal and Novel shot at same time, different arms, but recommend getting seasonal shot early if possible.  

Groups reported out whether consensus on option 1, 2, or 3, or mix.  Our results:  15 tables, with between 6-10 people per table.  
Option 1: ( go slow) 3 tables
Option 2: (moderate option) (yes, we did recognize and discuss use of the loaded terms in the options)  7 tables.
with a number of tables saying they were a 1.5 not a pure 2.
Option 3:  (full throttle) 2 tables.
A mix of option 2 & 3 -- 'targeted full throttle' 3 tables - reported this out even tho not one of the identified options.
Groups very split on whether they felt the demand for the vaccine would be low or high -- even with assumption of same severity -  No good discussion of HOW MANY SICK OVERALL - most groups/individuals seemed to assume the infection rate would be the same as the spring/summer - no assumptions or estimates discussed or provided by the CDC or moderators.  Attendees for the most part seemed to equate 'same severity' with 'similar number sick'. A big hole in the discussion, in my opinion.  (I'd already asked my 2 questions during group discussion, and they didn't want to bring the microphone back to me, and no one else at my table seemed interested in pursuing it.  :)

On line poll: group discussion afterwards that it seemed VERY BIASED toward one answer -  didn't explore multiple alternative pathways of 'pick one of 2'.

Poll results:  Q1: after discussion, which option do you prefer?  47% said moderate, 35% said full throttle, 18% said slow.  ( 113 responses)
Q2: pick your top reason for your choice above..
  (paraphrased -- we didn't get copies of the questions -- they were just in the power point) (114 responses)
  59% - protect the maximum number of people
  18% - freedom to make own health care decisions
   9% - protect against side effects
   8% - flu won't be as severe as being predicted
   4% - spend less money on it
   2% - limit the role of Government
   1% - I won't get sick          

Q3:  Of the following 2 choices, which is more important?
(I don't think I have the exact wording of this -- may not have been 'most important, might have been which reason would you choose, but you get the gist...)
  (116 responses)  a) freedom of choice (32%)
 or b) protect the most people (68%)
Q4.  Of the following 2 choices, which is more important?
 (note: from here on there were between 110 and 114 respondants to each question- I couldn't write fast enough ..:(  )
  a)  protect against side effects (23%)
  b)  protect the maximum number of people (68%)

Q5. Of the following 2 choices, which is more important?
   a. spend less money on it (10%)
    b)  protect the maximum number of people (90%)

Q6. Of the following 2 choices, which is more important, do you believe?
  a.  flu won't be as severe as being predicted  (23%)  
  b.   protect the maximum number of people (77%)
(by this point - or the question before --the natives were getting restless --- NOT happy that the second choice was always 'protect the most people ---)

Q7. Of the following 2 choices, which is more important?
    a. I won't get sick  (13%)
    b. protect the maximum number of people (87%)

Q8. Of the following 2 choices, which is more important?
     a. limit the role of Government(26%)
     b. (guess what goes here ___) protect etc. (74%)

Q9.  If the flu is less severe than expected, which response mode do you recommend?
   Slow (35%)
   Moderate (46%)
   Full Throttle (19%)
Q10. If the flu is more severe than expected, which response mode do you recommend?
    Slow (7%)
    Moderate (27%)
    Full Throttle (19%)

Sorry to be so windy --  I think I have captured the day accurately (within at least a 90% confidence range...  :))

Happy to answer any specific questions --      

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by: elint6000 @ Sat Aug 08, 2009 at 19:44:30 PM CDT

excellent summary!

thank you so much!

GetPandemicReady.org - non commerical website with practical ways for families to prepare.

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by: Average Concerned Mom @ Sat Aug 08, 2009 at 20:00:04 PM CDT

[ Parent ]

thank you!

double check... is q 10 full throttle still 19% (same as q 9)?

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by: DemFromCT @ Sat Aug 08, 2009 at 21:52:57 PM CDT

[ Parent ]

Q10 percentage -

sorry - the percentage for 'full throttle ' response for Q10 - if the flu was MORE severe than expected was 65%.
slow was 7% and moderate was 28%

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by: elint6000 @ Sat Aug 08, 2009 at 22:26:47 PM CDT

[ Parent ]

adding my thanks!!

well done for reporting back!

Just a (possibly minor) comment.  I suspect with this kind of public engagement, they have to be careful not to let one group affect the next one, which is probably why they were reluctant to post the video online.  They probably want to make sure the different audiences all came in with similar levels of prior understanding!

Not easy in this internet age, when people talk to each other online!!  LOL




All 'safety concerns' are hypothetical.  If not, they'd be called side effects...

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by: SusanC @ Sat Aug 08, 2009 at 22:23:01 PM CDT

[ Parent ]

video issue- Lincoln meeting

they specifically stated that each group was going to view the video - to make sure everyone saw the same thing, and got the same introduction--
my assumption from their response was that they wanted all participants to have at least the same BASIC level of understanding, and the same introduction --  on that basis, there would be no reason NOT to post the video, since the concern seemed to be making sure there was a common starting point, providing consistent basic information to the participants, and not forgetting to tell something one time, but include it another.

Also, our local public health people after the meeting were encouraging participants to hold further discussions, blog on this meeting, and generally 'spread the word' further.
Which I was kind of surprised at, since I had some of the same thoughts about not affecting the future meetings...
so maybe, if you're going to a future meeting - stop reading this thread before you get to this point... :)

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by: elint6000 @ Sat Aug 08, 2009 at 22:37:31 PM CDT

[ Parent ]

no, maybe if you're going to a meeting

AND if you are reading FW, you should continue to read and think and talk about it.  ;-)  We're a (relatively) small group on the grand scheme of things, and this community thrives on conversation here.  It would be different if they post everything out there, I think.

I'm forwarding the agenda to Dem, and let him decide whether to post it, cos, among other things, I'm traveling tomorrow and out of circulationg for a bit.

Again, well done and thanks for keeping us posted.  Let's see what the next group is like!  ;-D



All 'safety concerns' are hypothetical.  If not, they'd be called side effects...

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by: SusanC @ Sat Aug 08, 2009 at 22:45:50 PM CDT

[ Parent ]

I would post it after the meetings are over

which won't take long. it's not as important as the excellent summary we just got.

BTW, we did the same with MaMa posting event round-ups the last go-round, which was Keystone hosting with ASTHO the school closure issue.,

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by: DemFromCT @ Sun Aug 09, 2009 at 07:13:24 AM CDT

[ Parent ]

I have a question

when they said 'protect against side effects', did they give any description of what might the likely side effects be?  Cos if people don't know what they are up against (I know they said no adjuvants), how are they supposed to determine how much side effect is acceptable?  



All 'safety concerns' are hypothetical.  If not, they'd be called side effects...

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by: SusanC @ Sat Aug 08, 2009 at 22:25:07 PM CDT

[ Parent ]

side effects; discussion at Lincoln meeting

The repeated comment 'assume side effects similar to current seasonal vaccines' -- we only received slight additional expansion of that - CDC verbally (and quickly) gave some stats (I didn't catch them) as to the incidence of Guillian-Barre syndrome from seasonal flu vaccine-
also emphasized that some side effects of the vaccine have also been experienced as side effects of the flu itself -  stated they will be using the Vaccine Adverse Effects Reporting System(VAERS); that they will increase the capacity of that system; and that they will also be using the Vaccine Safety Datalink (all they said about the datalink was that it provides info about the risk of vaccine side effects that VAERS cannot provide -- and I know nothing about it.....)
An interesting question asked by an MD near the end of the session did relate to this question, tho -- he asked  whether they had any info or predictions on side effects on children due to mass vaccinations of children with a flu vaccine-- since most flu vaccine in the past has NOT been directed toward children, and only a small proportion of children have historically been vaccinated with a flu  vaccine.  The answer was a pretty simple 'no, but it would be monitored closely'.  

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by: elint6000 @ Sat Aug 08, 2009 at 22:53:54 PM CDT

[ Parent ]

Nice report

One reason to have the choices between X and  protect the maximum number of people, is that you can get a pretty accurate ranking of the other choices.

1. Freedom of choice
2. Limit the role of govt.
3. Protect against side effects
3. (tie)   Flu won't be as severe as being predicted
4. I won't get sick
5. Spend less money on it

Different ranking than question 2

To calm the wife buy cases of chocolate, to calm the husband buy cases of booze, and to calm the children...... heck the booze and chocolate should work.

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by: Oremus @ Sun Aug 09, 2009 at 13:46:09 PM CDT

[ Parent ]

Thanks!

I appreciate the information!

I don't much like the pairs of questions where one answer is always the same.   If you say anything other than doing the best thing for the maximum number of people, then I think that could be really guilt-producing.  After all, isn't the knee-jerk reaction supposed to be that answer?

It's probably a good thing I can't attend one of these.

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by: Clawdia @ Sun Aug 09, 2009 at 14:39:58 PM CDT

[ Parent ]

Good newspaper story on the Lincoln meeting

The Lincoln Journal star did a good job of reporting on the meeting -  it is actually on the front page of the Sunday newspaper 'above the fold' and continued further in. Can't ask for better headline space than that...
here's the link  http://www.journalstar.com/new...

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by: elint6000 @ Sun Aug 09, 2009 at 10:22:29 AM CDT

Adding my thanks as well

Excellent summary!!!  Thank you so much for getting this out so quickly.  I hope I can match your standard, or at least add something more after the Sacramento, CA meeting on the 15th.

I don't like the 2-choice poll questions they used either, but I guess it is an effective methodology for getting the response they were looking for.   :-)

I think the "side-effects" issue could be something we can explore more fully at the next round of meetings.  Any other ideas?

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by: drd1106 @ Sun Aug 09, 2009 at 12:27:22 PM CDT

side effects and other ideas to pursue

 maybe the issue of severity AND overall expected numbers becoming ill  --
most didn't seem to think in terms of MANY more people getting sick, even at same severity of symptoms range  -- didn't have much discussion re: economic/social/effects -- and not clearly stated by the moderators --  only one or two tables even discussed somewhat numbers or % of population that may get ill and the impact thereof.    

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by: elint6000 @ Sun Aug 09, 2009 at 14:00:38 PM CDT

[ Parent ]

upcoming NBSB meeting

cross-posted for attention!!

public teleconference on Friday August 14th.  http://www.hhs.gov/aspr/confer...

More details with agenda in this diary http://www.newfluwiki2.com/sho...



All 'safety concerns' are hypothetical.  If not, they'd be called side effects...

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by: SusanC @ Wed Aug 12, 2009 at 16:50:22 PM CDT

Public Engagement Meeting in Sacramentso

Sorry I am only sending this "report" now, but I had A LOT of family issues this week.

I attended the CDC Public Engagement Meeting in Sacramento last Saturday.  I would say 150-170 people attended this session.  I believe most were based in Sacramento, but I came from Los Angeles and someone at another table came from San Diego.  After the overview, we also saw the 30 minute video that provided background information on H1N1.  The video is now available for viewing on the Keystone website - http://www.keystone.org/H1N1.  I think it was A LOT to absorb if you did not know anything about H1N1, but I think at least half were rather knowledgeable already.  I gauge this from the questions asked; the other half or so of the participants had really basic questions.

After a presentation on the three scenarios, we had almost 2 hours for  in our groups.  The discussion question was, "What type of implementation planning strategy should the US adopt against the Novel N1H1 virus?"
1) Go Easy - Only federal funds used, none or very few extra vaccination sites besides those used for seasonal flu shots, basic communication available without wide distribution.  Aim is to meet expected low public demand for vaccine and to do so throughout the flu season without rushing to vaccinate early on.

2) Moderate - Federal funds with limited state and local funds, promote vaccination for eligible groups (the ACIP recommended target groups), and vaccinate them relatively quickly, set up a few extra vaccination sites beyond those used in a regular flu season.  Aim is to raise the expected low public demand for vaccine.

3) Full Throttle approach - Both federal and significant state/local funds are invested in creating numerous vaccination sites, extensive PR activities, etc. Aim is to create and to respond fully and speedily to significant public demand, even if severity of the illness is initially perceived to be low.

One key assumption that was very poignant for Sacramento was that as one moves from "go easy" to "full throttle" we move from only federal funding to significant state and local funding.  As many of you know CA had one, if not the largest, state budget deficit in the country.  It has been a very painful process to finally achieve a balanced budget, but many law suits have been initiated based on the budget cuts.  

The $350 million allocated to the states this summer for the vaccination campaign will only be a drop in the bucket in terms of what is needed at the state and local level.  The public health officer from a local county mentioned that her budget had been reduced by $6 million, but only expects to get $450,000 from the $350 million pie for her county.  They aren't sure how they are going to run the seasonal flu clinics this year!!!

Report Back From Tables - Almost all tables combined approaches, and the two most prominent were moderate/full throttle (7 tables) and full throttle/slow (4 tables).  The other tables had various combinations, but one table was completely full throttle.  Almost everyone felt that communication should be full throttle, but actually vaccinating people should either be moderate or slow.  This was primarily due to the concern related to vaccine safety and wanting more time for testing.  But in some ways this is counter intuitive.  If the vaccine is relatively safe because it is a strain change not a change in the way the vaccine is produced (remember, we were only talking about non-adjuvented vaccines), it is only after MANY people have been vaccinated (maybe thousands or millions) that safety/serious side effects may become apparent.  So it may not make much sense to raise people's demand for the vaccine, but not have it available because we are going slow on the administration of the vaccine.

You will be happy to know that they DID NOT do the forced choice (with protect the maximum number of people) series with our group.  We did do the polling, but only 68-77 people responded.  Since we had well over 100 (maybe even 140) still in the room, so I am not sure why the drop.  Either federal government employees or all government employees were told not to participate in the poll.  If it was the later, that would explain the drop and give an indication of how many were government people and how many were citizens or from the private sector.

I'm sorry that I could not write the results as fast as elint6000 in Lincoln!!!!  We were first asked which strategy we personally felt was most appropriate.  The choices were only go easy, moderate, full throttle; no combining.

Go Slow - 15%
Moderate - 57%
Full Throttle - 28%

Then asked, what about in a Less Severe Pandemic/Disease Outbreak
Go Slow - 33%
Moderate - 56%
Full Throttle - 11%

Then asked, what about in a More Severe Pandemic/Disease Outbreak
Go Slow - 11%
Moderate - 47%
Full Throttle - 42%

They also asked the series of questions about why we responded the way we did, but I couldn't write those down.

Was it worth it? I don't know.  I guess it was good to see what others thought and what questions people had.  People I talk with express the desire that the vaccine be offered free.  I received more clarity on that issue; although the vaccine is free, the administration is not.  Well, I knew that, but not the implications.  Therefore, people with private insurance will get it free.  Those who get thier shots (like seasonal flu shots) from a commercial establishment and do not have insurance will have to pay something.  The hope is that the departments of public health across the country will cover the administration costs and offer the vaccinations free at clinics or PODs, but local health departments are very concerned about being able to do that.  Obviously a massive number of trained volunteers are needed.  I am not clear how that will actually be done and fear those without insurance will suffer.  Maybe the public health departments will have the capacity to stand up clinics and vaccinate only the target groups.  Who knows.

I think it will be very interesting to see what the impact of having less vaccine available than previously thought (40 million doses by mid-October rather than 120 million) will have on the next series of public engagement meetings.  I guess it depends on if participants know this information.  Whether or not it impacts the upcoming meetings, it is sure to impact what is actually possible.

Okay, this is WAY TOO LONG.  Sorry.

Don't forget, there will be a Public Engagement WebDialogue, August  26-27 and August 31-September 1st.  For more information, go to http://www.webdialogues.net/pu...  

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by: drd1106 @ Fri Aug 21, 2009 at 13:54:04 PM CDT