The following was originally submitted prior to Yearly Kos 2007 to the Journal of Netroot Ideas (JONI), which is on hiatus. JONI is expected back in time for Netroots Nation in summer 2008.
Since the formal and official federal response to disaster, including pandemics, is complex and untested on a large scale, resiliency preparation on an individual and family level would be a great way to anticipate and prepare for natural disasters from earthquakes to ice storms to pandemics - in advance. Community resilience can thereby be enhanced from the bottom up, as well as the 'top down'.
The preparations required to mitigate an influenza pandemic are beyond anything public health or government officials can do alone. An on-line community, with the help and participation of experts, can come up with solutions and ideas to supplement the work of official agencies, especially where existing solutions are absent or incomplete. The community/interactivity model pioneered by political blogs can be successfully adapted to the public health sphere. Non-governmental internet resources can provide public debate, participation, and other tools that both engage and educate the public on how best to prepare.
Flu Wiki is an interactive “wiki” website, accompanied by a conversation space structured like a traditional web log or “blog”. A blog (web log) allows anyone to add comments to an author’s on line published piece (although that function can be turned off at the blog owner’s discretion). A wiki is software that not only allows content addition by an author like a blog, but allows collective editing to produce a final product. This means that any reader can add information and edit the author’s original core piece. While that may seem anarchic, the ability to use many eyes to find and correct errors has been written about in Nature , who found the science content of Wikipedia about as accurate as the Encyclopedia Brittanica (both contain errors, and any encyclopedia should be considered a starting point only).
No registration is required to add material to the wiki. Registration is required for comment in the Forum. Both sites are moderated by the same individuals; inappropriate comment and commercial links are removed.
Flu Wiki has been cited as a reliable source and community communications model in Science , Nature , the Harvard Business Review , the University of Pittsburgh Medical Center’s Biosecurity and Bioterrorism journal, the American Academy For the Advancement of Science and the library sciences journal Medical Reference Services Quarterly.
Introduction To The Pandemic Flu Issue
The next pandemic is a matter of “when, not if”, and the current H5N1 (bird flu) in the news is a real threat. Robert Webster and Elena Govorkova , writing in New England Journal of Medicine said:
“Clearly, we must prepare for the possibility of an influenza pandemic. If H5N1 influenza achieves pandemic status in humans — and we have no way to know whether it will — the results could be catastrophic” and this concern is echoed by public health authorities around the world .
The reason that H5N1 is such a concern is that it’s established itself in the bird and animal population (cats in Indonesia are not excluded from this virus, and there’s speculation that they may have some undefined role in viral spread). Each human exposure is another chance for viral mutation. In its current form, H5N1 is infecting about one person a week, and killing ~60% of those in whom it infects. Further, >90% of its victims are under the age of 40 (and predominantly under the age of 25).
There is no data that says this lethality must drop if H5N1 does mutate into the next pandemic virus. The WHO Working Group reported in September 2006: “However, should the virus improve its transmissibility through adaptation as a wholly avian virus, then the present high lethality could be maintained during a pandemic.”
Pandemic preparedness for a worst case scenario like this is necessary and prudent. The SARS Commission in Canada , reviewing what went right and wrong with the response to a deadly infectious disease outbreak, wrote
“SARS had Ontario’s health system on the edge of a complete breakdown. The wonder is not that the health system worked so badly during SARS, but that it worked at all. SARS also badly hurt Ontario’s international reputation, setting up an unfortunate link in the minds of many in other countries between Toronto and a mysterious deadly disease. Worst of all, SARS demonstrated how many earlier wake-up calls had been ignored, and how few of their warnings had been heeded...
We must remember SARS because it holds lessons we must learn to protect ourselves against future outbreaks, including a global influenza pandemic predicted by so many scientists. If we do not learn from SARS and we do not make the government fix the problems that remain, we will pay a terrible price in the next pandemic. (bolded mine).”
The only way to deal with a catastrophic natural disaster like a pandemic is to plan for it in advance. Natural disasters can not be stopped but they can be mitigated. That effort to do so is at the core of this paper. The preparations required are so vast that they exceed what any public health agency can do alone. Recognizing this, The United States Department of Health and Human Services (HHS) and the Center for Disease Control and Prevention (CDC) has recommended two weeks of food and water be stockpiled by every American in the event that the projected 30-40% pandemic flu attack rate means that key deliveries and services are disrupted (easily done in our “just in time” economic system). In addition, recruitment from the virtual community that this paper represents (see below) for ideas about, and support of, personal preparation efforts is an ongoing and integral effort by HHS, crystallized by the Pandemic Flu Leadership Blog, an effort to increase dialogue amongst community leaders about this important issue. From the Leadership Blog :
That’s where the grassroots approach comes in. A vibrant and engaged community of concerned citizens has developed over time in various places online, such as the Flu Wiki and the Pandemic Flu Information Forum. On their own, they have come together to share news and preparedness tips, and many participants have tasked themselves with educating their community leaders and neighbors.
The internet has become a commonly used tool for political discourse , discussion and opinion. The rapid response and interaction have become trademarks of a ‘Web 2.0 approach’ , meaning that the interactivity of the reader and author is integral to the process of dialog and information exchange. One of the most interactive of the social software tools available is the wiki . While it is now in 2007 a common enough application of social software , the use of wikis to advance public health goals was unique in 2005
As a front page author and contributing editor at the Daily Kos, writing under the pseudonym DemFromCT , I first wrote about the threat of an influenza pandemic in November , 2004 , just after the election. In June of that year, the Flu Wiki was launched. This was the brainchild of several bloggers, including myself, Melanie Mattson from Just A Bump in the Beltway , and the Reveres from Effect Measure , all of whom felt that there was not enough information currently available on the internet to help in influenza pandemic preparation. We felt that if a clearinghouse for pandemic planning could be established, and the collective wisdom of the public could be harnessed, planning for a catastrophic pandemic event could be enhanced. Since much of the planning would be beyond that of traditional public health services, the public’s experience would be needed for everything from trash collection to water resources to advice about law enforcement, ethics and economic impact.
From the humble beginnings of a simple collection of pandemic plans from around the world , the Flu Wiki has grown to include a conversation community using blog software , as well as the ‘wiki proper’. Since its inception in June of 2005, the Flu Wiki web sites have had 2.5 million unique visitors, and over 12.5 million page views, representing an unusually robust reading experience online (many websites, including Daily Kos, average 2 page views per visit). At the height of pandemic influenza media interest, in September 2005 (coinciding with the release of the White House’s National Strategy for Pandemic Influenza ), the traffic to Flu Wiki was equal to that of the Department of Health and Human Services’ official site, pandemicflu.gov.
Currently, the Flu Wiki community prepares for the possibility of a flu pandemic at the individual and community level by sharing information, resources, ideas and materials generated from within the community and collected from around the world. In doing so, we assist public health authorities by reaching a public that officials would otherwise have difficulty reaching.
The Flu Wiki community has voluntarily and spontaneously organized themselves into ‘projects’ meant to further the education of other on-line and off-line users.
For example, while public officials from all over the world have access to plans and planning at every level, members of the community have prepared and posted slide shows and presentations that anyone can access and use in addressing local school boards, community groups, civic organizations, etc., about pandemic preparedness. Access to Flu Wiki’s downloadable file storage site is posted on the wiki. Coupled with the rich content already posted elsewhere on the internet, and with the links provided, wiki users can educate themselves and community members on issues pertaining to pandemics, including tips on creating and producing presentations.
Another project of interest is news tracking. Volunteers search the internet for influenza news from all over the world. Indonesia, for example, has reported more deaths from H5N1 than any other country. Using Toggletext or other translation software, and supplemented by native speakers, volunteers track local reports of hospitalized and suspected cases of H5N1 in birds and humans.
Other volunteers create maps and lists, helping to detail any spike in cases that local news media reports. Official sources, particularly WHO, are considered by community members to be the gold standard of reporting. However, the full reporting of test results is often slow and sometimes incomplete. Negative testing in countries like Turkey have been reported to be negative before reporting as positive. The engagement by community members allows for greater confidence in official results and allows for constructive questioning when media reports do not match official results for whatever reason. On-line detailed postings might allow officials to know where to concentrate their own efforts.
Individuals in the world-wide community of readers have requested use of the wiki and forum space for the purposes of local preparedness and communication. For example, volunteers have translated content into Norwegian, Spanish, French and Turkish.
Our Caribbean readership has requested to use the Flu Wiki and Forum in training exercises and workshops designed to further both pre- and inter-pandemic communication. We can assist, in limited scale, other countries’ participation in an interactive communication web site along the model set up with Flu Wiki and the Flu Wiki Forum, especially for those countries who feel they have technology limits of their own.
Integration between the two sites allows for listing of links and factual data on the wiki and conversation on the forum. Examples of topics covered include school closings, water resources, food storage and meal planning on a limited budget, physician guides to basic home care (assuming hospitals will be full and people will be asked to self-treat) and mass-casualty preparations.
In many cases, more questions than answers exist, and the ability to begin to address the lack of definitive answers lends itself to debate, discussion and an informed citizenry. Areas such as personal stockpiling of tamiflu and the use of masks by the general population are examples of how discussion with authoritative links (where available) have contributed to the understanding by the on-line community of the need for protection of health care workers, the issue of supply shortage and the concept of triage, and rationing when supplies are limited. An ethics section and links to the Toronto SARS experience are examples of using data and experience to avoid panic and anticipate problems before they occur.
Flu Wiki has been approached by various government entities for feedback and comment on ongoing local and federal programs. For example, New York State posted its draft ventilator triage protocol for public comment prior to official release.
Not everyone has been unanimous in accepting Flu Wiki and other on-line pseudonymous source as 'reliable', though there have been vigorous defenders as well as critics. Government agencies are not always familiar with the blog world, or the idea of interactivity, nor do they always have time even when interested. However, this is beginning to change, partly through the role Flu Wiki and its community have played on- and off-line, and partly with familiarity of the format.
The purpose of the Flu Wiki is to help local communities prepare for and perhaps cope with a possible influenza pandemic. This is a task previously ceded to local, state and national governmental public health agencies. Our goal is to be:
- a reliable source of information, as neutral as possible, about important facts useful for a public health approach to pandemic influenza
- a venue for anticipating the vast range of problems that may arise if a pandemic does occur
- a venue for thinking about implementable solutions to foreseeable problems
Projects initiated by the Flu Wiki community include exchange of audio-visual materials for presentations, use of the websites for international communication, and building of a library of relevant reference material. By so doing, Flu Wiki and the on-line community are helping to put the ‘public’ back in ‘public health’, and building a stronger partnership with public health authorities, which will be critical in the event of a future flu pandemic that, sooner or late, is bound to happen.
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