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Welcome to the conversation Forum of Flu Wiki

This is an international website intended to remain accessible to as many people as possible. The opinions expressed here are those of the individual posters who remain solely responsible for the content of their messages.
The use of good judgement during the discussion of controversial issues would be greatly appreciated.

By Parents, for Families

by: SusanC

Sun Nov 04, 2007 at 09:37:43 AM EST


( - promoted by SusanC)

'Talking Points' on grassroots pandemic preparedness and community engagement
Susan Chu MD
Editor, Flu Wiki
Coordinator, ReadyMoms.org
(as posted at the APHA Expo 2007 ReadyMoms.org booth #362)

HANDOUT
Posters used for this event (4 sets of 2 each) can be downloaded here:
1 of 4
2 of 4
3 of 4
4 of 4
SusanC :: By Parents, for Families
"If you go into a planning meeting and more than half (of) the people in the room are subject matter experts, you need to call timeout, go grab someone off the street, and run your ideas by them.  See if they will work......we need regular people, normal people, like cab drivers or whatever..."

emergency response professional







Pandemic influenza may be a classic example of  "wicked problems" - problems in public policy that are particularly intractable to solutions developed by traditional analytical methods and implemented via the usual hierarchical institutional structures of government.  Conventional responses such as vaccines and antivirals will likely fall far short of bridging the gap between resources and needs. Historical experience and modeling suggest that the community mitigation measures recommended by the CDC may reduce overall morbidity and mortality to a significant degree.  Implementation will involve multiple sectors of society.  Mitigation of secondary consequences can be achieved in a variety of ways, most of which involve a high degree of citizen participation and consent. 



Building individual and community resilience is crucial to counteracting the numerous local and systemic challenges that are likely to arise in a pandemic.  Services are likely to be degraded and matching resources to need in a timely manner will test official responders to the limit.  Experience from recent disasters show that private citizens are frequently the actual 'first-responders' who through intimate knowledge of their community are often capable of acting effectively to save lives. In a disaster as extended in time and globalized in scope as a pandemic, the general principle in professional disaster response that incidents should be managed at the lowest jurisdictional level should perhaps be extended to reflect that the lowest jurisdictional level will likely happen at the level of the individual and family unit.



Such local and practical knowledge is useful in planning and preparedness as well.  Given adequate scenario-specific information and guidance, individuals are generally able to determine the most appropriate ways of preparing ahead of time.  Citizen preparedness efforts should however complement and not replace official action.  What is needed is partnership and coordination through sustained public and community engagement, to facilitate mutual learning, to establish working relationships and more importantly mutual respect and trust. 


Adequate preparation for a pandemic will necessitate a certain amount of home stockpiling of essential items.  This should however be the starting and not the end goal of individual and family preparedness.  Through ongoing participation in "sharing the job of worrying", the motivated layperson with modest education can over time achieve a remarkably sophisticated understanding of the complexities of pandemic influenza mitigation, including especially the constraints of government.  The establishment of local knowledge communities will significantly enhance official responses, provide the 'voices of reason' needed when issues of equity arise and public trust is critical, and most importantly enable citizens to improvise with appropriate innovative solutions to unforeseen circumstances.  This goal, of empowerment of individuals and families, is intangible but perhaps more important to the wellbeing and eventual outcome of the community, than any amount of stockpiling of materiel can achieve!



The optimism inherent in the American spirit is a national strength and the source of the dynamism needed for innovative solutions to novel challenges.  It can also be the source of significant cultural bias against attempts to establish a 'Culture of Preparedness'.  In addition, as distinct from hurricanes or earthquakes that involve visible physical damage to infrastructure or persons, the disaster agent in an influenza pandemic is an invisible but potentially all pervasive threat with numerous complex consequences.  This makes it potentially simultaneously difficult to comprehend and subject to speculations and extrapolations that may be difficult to disprove.  There is therefore an intrinsic challenge in risk communication, in that the level of understanding required for an individual to start preparing for a pandemic may at the same time result in varying degrees of fear and anxiety that officials may find hard to dispel without negating the message for preparedness!


On the other hand, it is important to recognize that "fear and dread are appropriate responses given the scale of human suffering and economic upheaval that is possible."  Such natural psychological responses are probably necessary if not invariable interim stages towards a more balanced and nuanced understanding that develops over time, and should not be confused with the archetypal 'mass public panic' that exists still as a popular institutional myth.  In addition, the process of working through such 'adjustment reactions' is likely to result in more resiliency and should perhaps be considered an integral part of preparedness. 



Changes in demographics mean that the next pandemic will have particularly severe impacts on families with children.  Indeed, the vast majority of contributors to online unofficial pandemic-related information and preparedness resources are concerned parents.  Many have moved from an initial overwhelming urge to protect their families against all possibilities of infection, to the awareness that an overall level of community preparedness offers better protection to their families than attempts at total self-isolation, resulting in a corresponding desire to promote pandemic preparedness in their communities.  This evolution in thinking is aided and accelerated by an adequate understanding of the scale of potential mitigation possible with the community mitigation measures.  This however is a sophisticated level of knowledge that is unlikely to be achievable overnight with a totally ignorant public.


An additional caveat on the road to facilitating this process lies in the natural tendency for professionals to be critical of citizen responses that are at variance with their professional judgment, to 'educate' the public out of seemingly misguided notions of what preparedness entails.  While this is often (but not always) justified and may be necessary for reasons of significant public safety, there may be trade-offs in the public's loss of trust or even antagonism that need to be carefully evaluated.  If knowledgeable and empowered individuals and communities is the end goal, then the road to empowerment is likely to lie in evidence-based persuasion, dialogue, accommodation, and acknowledgment of citizens' efforts, however amateurish and at times incorrect.  If pandemics are indeed 'wicked problems', it is arguable that there may be less science than art (of intuition) in determining what constitutes real preparedness. 



There are currently severe barriers to entry for non-credentialed citizens in promoting individual and community preparedness - the traditional view that experts know best is still the overwhelmingly predominant one.  While subject matter expertise is important for accurate evaluation of scientific and other specialist data, current institutional bias is such that eminence is most often equated with increasingly narrow areas of specialization, attributes that are not well matched to the diffuse, 'complex adaptive' nature of the threat.



In addition, the extent of uncertainties of almost every aspect of influenza science and pandemic mitigation, and the need to seek safety (in numbers) and reassurance is such, that deferring to or waiting for expert guidance has become the default position for many local planners.  This is an unfortunate state of affairs, and may put communities in danger when policies are either developed without taking into consideration their effects on the real life circumstances of individuals, or, worse, when 'waiting for guidance' becomes a chronic substitute for developing local innovative solutions. 



The small internet-based community of 'preppers' consists mostly of non-credentialed individuals whose successes in preparing and developing solutions DESPITE the lack of official and consistent guidance, demonstrate clearly the extent to which individuals can be empowered to help themselves and their communities.  Parental risk perception is the single most powerful driver for these individuals; professionals may find useful lessons in such grassroots experiences.


--------------------------------------------------

The following series of posters attempt to illustrate some of the 'talking points' raised in this overview.  Ideas and opinions expressed belong solely to the author and do not represent those of Flu Wiki as a community of participants nor any of the other editors.


Conflict of interest: none


References:

  1. Department of Homeland Security, Draft National Response Framework, Sep 2007

  2. Flu Wiki http://www.fluwikie....

  3. Hatchett et al, Public health interventions and epidemic intensity during the 1918 influenza pandemic. PNAS. 2007 104(18):7582-7.

  4. IOM Board on Global Health, Ethical and Legal Considerations in Mitigating Pandemic Disease (2007)

  5. CDC, Interim Pre-pandemic Planning Guidance: Community Strategy for Pandemic Influenza Mitigation in the US

  6. Redefining Readiness Project, The Center for the Advancement of Collaborative Strategies in Health, NY Academy of Medicine

  7. Schoch-Spana, Monica, Realistic Expectations about Public Responses to Pandemic Flu, Briefing for the House Committee on Science, December 14, 2005.

  8. Working Group on Community Engagement in Health Emergency Planning, Community Engagement: Leadership Tool for Catastrophic Health Events, Biosecur Bioterror. 2007; 5(1):8-25.

"Parents are generalists, by definitions.  Also survivalists.  Kids don't come with instruction manuals.  They throw curve balls at us every day, at the most inconvenient time and the most ungodly hours.  We survive them."

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Excellent posters, excellent work. n/t


"I am opposed to any form of tyranny over the mind of man."  Thomas Jefferson

Thank you, Susan C!
These posters are very clear and persuasive.  I hope we see viral replication and international distribution from your excellent work!

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

thank you
I hope we see viral replication and international distribution from your excellent work!

Actually, I didn't realize (mostly because I didn't have time to stop and THINK, lol) that there are a lot of international delegates here. 



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


[ Parent ]
get some emails from exotic places?


You arm yourself to the teeth just in case.  You don't leave the gun near the baby's hand.

[ Parent ]
could we see a photo of the set up
while you still have flyers, and with your faces masked as apropriate?

You arm yourself to the teeth just in case.  You don't leave the gun near the baby's hand.

later
we are in the opening general session, the exhibit hall is closed, the expo is formally open after the speeches.

Yes, I have a camera. I hope to be able to upload some pics.  ;-D



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


[ Parent ]
"we are in the opening general session" - live blogging, this is?
you gals/guys leave me speechless!

You arm yourself to the teeth just in case.  You don't leave the gun near the baby's hand.

[ Parent ]
they are giving these out today
http://www.newfluwik...

posted here as requested there

You arm yourself to the teeth just in case.  You don't leave the gun near the baby's hand.


the flyer
ReadyMoms.org

a grassroots volunteer initiative

We are parents concerned about the potential impact of the next pandemic on children, families, and communities.

We are especially concerned about the following:

  • If a 1918-like pandemic happens today, communities will suffer 20 years of normal child deaths (aged 1-19) in the space of one season.
  • The current H5N1 avian influenza virus is causing human infections with an overall case fatality rate (CFR) of 60%.
  • This CFR rises to 75% for those aged 10-19.
  • H5N1 has to become 30 times (NOT 30%) weaker to match the 2% CFR of the 1918 pandemic.
  • A WHO working group report in 2006 tells us that "the present high lethality could be maintained during a pandemic" caused by H5N1.

We believe parents have a right to be given this information, and be supported to make the decisions that are best for their family.

We believe that failure to assist families to make informed choices will result in severe social disharmony as bereaved parents take their wrath against officials who have failed them.

We believe it is possible to protect our families with adequate implementation of the social distancing measures as specifically recommended by the CDC, especially early and proactive school closure.

We believe these same measures will also make it safe for essential workers to go to work.

We understand that implementation of these measures will require communities to make some tough choices between the cost to the economy and saving lives. 

We believe that such choices cannot and should not be made FOR families and communities, only BY them.

We fully agree with the following sentiments expressed by this participant at the CDC Community Mitigation Stakeholders' Meeting (Atlanta, December 2006).

"The question of how much this will cost is the wrong question. The correct question is WHAT IS THE PRICE WE ARE WILLING TO PAY?  I would sacrifice everything I own to save one of my kids - EVERTHING. And I would consider it the best bargain of my life.
Why would we not do the same as a community or society?"

To support and complement official actions, we are doing our best to offer suggestions and solutions that will assist families and communities to prepare adequately.

Come and visit our display of preparedness items and ideas.  We are situated conveniently close to the poster sessions (booth #362)


You arm yourself to the teeth just in case.  You don't leave the gun near the baby's hand.

[ Parent ]
it's posted in the main section
under HANDOUT.

[ Parent ]
that was after i posted it as a comment - now people can see it before downloading it (or whatever works for them)


You arm yourself to the teeth just in case.  You don't leave the gun near the baby's hand.

[ Parent ]
"one of my kids"?!
"The question of how much this will cost is the wrong question. The correct question is WHAT IS THE PRICE WE ARE WILLING TO PAY?  I would sacrifice everything I own to save one of my kids - EVERTHING. And I would consider it the best bargain of my life.
Why would we not do the same as a community or society?"

My 14 yr old son said......What, you'd give everything for ONE of your kids? What about the others!


[ Parent ]
that's funny lol
See?  Kids keep us on our toes, not letting us get away with anything!

Which is what makes parents the most innovative and resourceful people!



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


[ Parent ]
Problems In Poster "Why parents are worried"
There are problems with the "Why parents are worried" poster.

Poster Point 1: "H5N1 infections are highly lethal, but appear to be more so in the young."

Please be aware that in the WHO graph shown on the poster, viz. "Human Avian Influenza A (H5N1) Cases by Age Group and Outcome (as of 2 October 2007)," the numbers in the table below the bar graph do not foot. They are internally inconsistent, and also disagree with the table "Cumulative Number of Confirmed Human Cases of Avian Influenza A/(H5N1) Reported to WHO - 02 October 2007" even after adjusting for the exclusion of the 12 Turkey cases from the graph.

I pointed out this problem to WHO last month. They agreed and attempted a fix in the updated 25 Oct 2007 version of the graph.

Unfortunately, although part of the problem appears to have been fixed, there are still errors in the update. Assuming the table row leader totals are correct, 21 cases should be reclassified from "Alive" to "Dead," but the ages are unclear. Until a thorough review is done, it's unknown whether other changes will be needed.

In reply to my follow-up on the updated 25 Oct 2007 graph, WHO told me that it will take some time for them to reexamine their database, which they agree needs to be done.1

I don't know how far back this problem extends since I frankly wasn't paying much attention to this graph, and had assumed the numbers were correct. I also just noticed that the version dated as of 10 Sep 2007 appearing in Trust for America's Health and American Academy of Pediatrics, Pandemic Influenza: Warning Children At-Risk (Oct 2007), p.3, is also incorrect.

Poster Point 2: "A 1918-like pandemic will cause 20 years of child deaths in one season."

As I said a year ago, the claim that a 1918-like influenza pandemic will cause 20 years of child deaths is based on flawed analysis and is wrong.2,3

Carter Mecher, M.D., of the U.S. Dept. of Veterans Affairs, is said to have made the claim during his presentation at the Institute of Medicine of the National Academies on 26 Oct 2006.4,5 The graph on the poster used here to support this "20 year" claim is apparently the slide he put up at the time.4,6

However, Mecher's graph contradicts the "20 year" claim. In fact, the graph used to support the "20 year" claim actually implies 10.05 years of child deaths. This is comparable to the 9.36 year number I calculated in November 2006 using a different approach and 2003 data. Updating my calculation with 2004 data produces 9.51 years.

The graph translates to years of child (ages 1-19 years) deaths as shown below. All death and population data used here are for 2004 because that is the latest year for which all necessary data are available.7,8 It is unknown what data Mecher used.

  1. For a pandemic projected on the graph in 2006, the death rate peaks on the graph for each of the 4 age groups, viz. 1-4, 5-9, 10-14, and 15-19 years, are approximately 610, 220, 255, and 415 per 100,000 persons, respectively.
  2. The baseline all cause death rate for each age group is subtracted from the peak rate to find the excess death rates attributed to the pandemic. In ascending age group order, the baselines are approximately 35, 15, 20, and 65 per 100,000 persons, respectively.
  3. The resulting excess death rates for the age groups are multiplied by the populations of the specific age groups to compute the number of excess deaths for each group. In ascending age group order, the populations are 15,994,000; 19,606,000; 21,145,000; and 20,730,000, respectively. The computed number of excess deaths in ascending age group order are 91,966; 40,192; 49,691; and 72,555, respectively.
  4. The excess deaths for the 4 age groups sum to 254,404.
  5. The number of years of child deaths is computed by dividing the total excess deaths for the 4 age groups by the total 1-year all cause death number for the groups. This is 254,404 divided by 25,325, which yields 10.05 years.9

Thus, the graph used to support the claim of "20 years" of child deaths actually refutes it.

A claim of "10 years" of child deaths from a future 1918-like pandemic would be supported by both my calculation (rounded to the nearest year) and Mecher's graph.

References
1. Personal e-mail communication received 01Nov07.
2. Marble, "How Many Kids Will Die In 1918 Scenario," Flu Wiki Forum (Old) (13 Nov 2006) at 00:33.
3. Marble, "How Many Kids Will Die In 1918 Scenario," Flu Wiki Forum (Old) (27 Nov 2006) at 04:17.
4. anon_22, "IOM Workshop Modeling Community Containment for Pandemic Influenza," Flu Wiki Forum (Old) (26 Oct 2006) at 22:00.
5. Institute of Medicine of the National Academies, "Workshop-Day Two: Thursday, October 26, 2006," Modeling Community Containment: Workshop Agenda online (Last Updated: 11/08/2006, 09:17 AM).
6. Mecher, C., "1900-Present All Cause Death Rates per 100,000 with a 1918-like Pandemic Today -- 1918 Age-specific Attack Rates and CFRs Applied to Current Population," 2nd and 3rd Order Impacts of Community Mitigation Strategies slide presentation (26 Oct 2006), slide 5. (PDF file p.5. File size 770KB)
7. MiniƱo, A.M., Heron, M.P., Murphy, S.L., Kochanek, K.D. (U.S. Centers for Disease Control and Prevention, National Center for Health Statistics), "Deaths: Final Data for 2004," National Vital Statistics Reports (21 Aug 2007) 55(19), Table 3 (revised as of 10 Oct 2007), p.21. (PDF file p.21. File size 3.5MB).
8. U.S. Census Bureau, Statistical Abstract of the United States 2006, (Washington: Government Printing Office, 2005), Table 16, p.18. (PDF file p.18. File size 1.86MB)
9. The baseline rates read from the graph are close, but not identical, to the baselines calculated from the 2004 data. However, because the peak rates are read from the graph, the baseline rates read from the graph are used for consistency. Moreover, Mecher could not have used the 2004 final death data here because they were not available when the graph was created. If calculated 2004 baselines are substituted for the graph baselines, then total excess deaths would be 255,321, and the number of years of child deaths would be 10.08.


thank you, i'll alert poster-owners in case they don't see this comment of yours


You arm yourself to the teeth just in case.  You don't leave the gun near the baby's hand.

[ Parent ]
thank you for your input
I will look into the various data sources, etc.  I am also emailing Carter Mecher about this, to see if he has any updates.



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


[ Parent ]
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