A Riposte on the Flu Wiki
Update for 02005 11 14:
One of the co-editors of the Flu Wiki wrote a long essay “In defense of The Flu Wiki: reply to Mattison” in a group blog on public health issues in the United States called Effect Measure. According to an explanatory sidebar, “The Editors of Effect Measure are senior public health scientists and practitioners. Their names would be immediately recognizable to many in the public health community. They prefer to keep their online and public lives separate to allow maximum freedom of expression. Paul Revere was a member of the first local Board of Health in the United States (Boston, 1799). The Editors sign their posts “Revere” to recognize the public service of a professional forerunner better known for other things.” At least Paul Revere and other leaders and ideologues of the American Revolution such as Thomas Paine had the courage to be identified by name with what they believed in.
The odd thing about this need for anonymity on the part of the co-editors of the Flu Wiki is that if they’ve already protected their identities on their blogs, why would they feel the need to further conceal themselves in the Flu Wiki. Reading over the comments on the Effect Measure blog, I’m struck at the amount of paranoia and conspiracy-fear. Some of these people make it sound as though the United States government has much in common with the Stalinist Soviet Union, minus the gulags and death purges.
Since I feel enough’s been said on the subject of the Flu Wiki as a trustworthy source of information, I’ve now closed off comments on this entry.
Update for 02005 10 10:
Having heard several times via comments here from at least two of the Flu Wiki’s editors, who still feel that they are doing the right thing even with no official endorsement (quoting from their About page, “… a task previously ceded to local, state and national governmental public health agencies”), I still question the validity, accountability and transparency of their exercise. As to their leadership, who are the editors and what expertise to this subject do they bring? The only person associated with this wiki who’s chosen to reveal anything about herself is the publisher Melanie Mattson. Why are editors DemFromCT, Revere and Cassandra still hiding behind e-mail addresses? And what does “previously ceded” to public health agencies actually mean? Are they saying they are now the authority because they will be addressing all these issues? And why, as I read in a comment from one of the editors on DrWeb’s Domain blog, are “health professionals, public health physicians, academics and risk comunication experts” unwilling “to be identified as such.” I suggest you find other professionals who are willing to stand up and be identified such as Dr. Grattan Woodson. I found his “Preparing for the Coming Influenza Pandemic” report very worthwhile. Make that a condition of contributing, anonymity on a medical information wiki is both irresponsible and indefensible.
Of course no one wants to minimize the risk of a pandemic and learning all you can about how to protect yourself is a sensible thing. But would you trust your life to information on a wiki? How could you guarantee that the information you’re reading is authentic and trustworthy even if the people are identified? How do we know these people are who they say they are? This is one of the most problematic areas with information from the Internet, whether you can trust it. A wiki simply compounds this issue to the point where the information ceases to be of value unless you yourself happen to know that it’s true.
Directing people to legitimate sources of information is fine, and my original post supports that, yet I don’t really see the need for this service given that most people may Google “flu” or “pandemic” or “infuenza” and come up with enough authoritative sites on their own. And as I originally pointed out in my first reply to DemFromCT, the kind of link compiling that the Flu Wiki’s doing is already available on the CDC and WHO sites, along with the U.S. Department of Health & Human Services (Pandemic Influenza Response and Preparedness Plan, a draft, released August 26, 2004), the Public Health Agency of Canada (Canadian Pandemic Influeza Plan), and many others.
The organizers of this noble enterprise have a responsibility, if they want to demonstrate real leadership in this area, to go the extra mile, as noted on DrWeb’s Domain blog, “… if you wish to do a grassroots effort, perhaps getting government sites, CDC, or WHO, or whomever in authority, to do better work, improve their sites, and become more helpful.. local or state government plans or discussions? encourage them at those levels.”
Finally, for anyone who thinks I’m being overly cautious, take a moment to read this part of the Medical Disclaimer on the Flu Wiki: “… The medical-related and management articles here are not meant as a substitute for professional care, nor is there any claim the information provided is sufficiently accurate or useful to make clinical decisions. Even when accurate, it takes professional judgment and specific information to know when it applies to a particular individual. This means, as a legal matter, no one who provides information here takes responsibility for the results or consequences of using it for the practice of medicine. … If you suspect you have a problem, see your health care provider.” (emphasis added)
After reading the current issue of National Geographic with its cover story on the pandemic crisis (anyone remember the doom and gloom scenarios of Y2K?), I’m sure these thoughts have occurred to others:
- Launch a local education program in countries to reform chicken ranching practices known to be high risk
- Initiate a chicken-death compensation program for countries too poor to reimburse their chicken farmers
- Let the UN or the US purchase the patent and give it to the world for Tamiflu (oseltamivir phosphate) and any other effective influenza medications currently under patent. The cost of this measured against the cost of human illness and death toll is miniscule. As an aside, it’s a little known fact that this was how photography propagated so quickly: France purchased the patent from Daguerre and gave it to the world, except for England, where Daguerre did patent his process because an alternate photographic process had simultaneously been developed there.
Original post, 02005 10 01:
For those wishing to contribute their expertise to knowledge of human and animal flus in preparation for the forecast pandemic flu a la the Spanish Flu pandemic of 1918, there’s now a Flu Wiki. The organizers have declared October 3 to 9, 2005 as Pandemic Flu Awareness Week. None of the organizers at the time of this posting have much information about themselves or their own expertise. While the site’s purpose is more as an information service for preparedness, an open wiki from a non-health or science agency is the very last kind of Web site anyone should use as a expert source for health or scientific information. I know I would feel better if this site were affiliated or endorsed by a public health agency or two. The site runs on the PmWiki software.
OTOH, if there were such a site run by, let’s say, CDC, we wouldn’t need a Flu Wiki. it is precisely because CDC does not that we do.
We’ll be happy to take Flu Wiki off-line when a comparable official or authoritative source appears. In the meantime, Flu Wiki’s links page will take you to offical resources, experts, etc.
Flu Wiki is non-commercial and will not endorse products, drugs, purveyors of same, etc. And if you’ll check the history of Wikipedia, you’ll find an amazingly good track record of accuracy.
It’s also a non-partisan site and will not put political spin on events, at least outside of its opinion forum.
It’s a wiki… if anyone finds inaccurate information, or opinion labeled as fact, you (the reader) are invited to edit and fix. That’s how wikis work… thousands of fact-checkers working to get it right.
Nonetheless, the points made here are well taken. The Flu Wiki doesn’t claim all knowledge resides there. It’s main strengths are easily found links to sources like the CDC etc, where you can read the public health agency’s recommendationd for yourself. And by putting state and local pandemic plans on line where each can read the other, we hope to strengthen the hand of the very public health agencies you refer to and we all rely on.
In a true pandemic, local communities will by necessity need to help themselves, not just rely on the government. To the extent that communication can help, we intend to contribute and do our part. Nor are we trying to panic anyone. Preparation, not panic, is the preferred approach.
Thanks for your review of the site. Check again over time, as the contributions of many strengthen what we have to offer.
Thank you very much for your counterpoint. Without checking back on the Flu Wiki, I Googled “pandemic site:gov” and came up with, on the first page of hits, a very thorough and authoritative site on the Influenza (Flu) by none other than the Centers for Disease Control and Prevention (CDC). Some of the information is also available in languages other than English. There’s also a special page on the avian influenza. So why would you claim that the CDC doesn’t do what you’re doing, which is basically to educate and inform the public, as well as plan for an outbreak and assist local public health agencies with their planning, when in fact they do? If you go to the References & Resources section of the CDC site, you’ll see there are all kinds of useful resources there, including other sites, response plans, and even software called FluAid for public health agencies. The World Health Organization also has an excellent site on planning for an influenza pandemic, and also provides data through another site called FluNet.
Right on. LII has a nice flu collection, too, http://lii.org/pub/subtopic/2662
David,
Good, thoughtful post on this.. see my blog item, too..
http://drweb.typepad.com/dwdomain/2005/10/the_ten_thousan.html
Best,
DrWeb
So why would you claim that the CDC doesn?t do what you?re doing, which is basically to educate and inform the public, as well as plan for an outbreak and assist local public health agencies with their planning, when in fact they do?
Actually, the effects of a major pandemic go way beyond what public health traditionally covers. You may check authorities such as the WHO and CIDRAP on this point: see ‘World as we know it’ may be at stake: UN pandemic czar from the Canadian press and this expert’s opinion from Foreign Affairs. This is not just a ‘bad’ flu season.
In a pandemic, there’s no ‘outside’ to get help from (everyone is affected). And the disruptions that potentially can happen are not in the least covered on the CDC site. Community-level preparations are a must. Supply chains everywhere might be disrupted.
Read the provided links. The idea isn’t to scare anyone, it’s to take a realistic look at the potential issues and work in advance for solutions to such local problems as who would deliver care to the homebound, how would we cope if 20% of the utility workers are out sick, etc.
And then show me where this is covered at the sites you cite.
P.S. Another reason for the do-it-yourself approach:
By REBECCA CARR
The Atlanta Journal-Constitution
Published on: 10/03/05
Washington ? Amid growing concerns that avian influenza will develop into a deadly pandemic, the Centers for Disease Control and Prevention is under fire by some in the scientific community for hoarding data crucial for vaccine development. The allegations come as CDC has issued new and controversial rules on what data, documents and other information it will ? and will not ? share with the public.
Open government advocates are critical of the CDC’s “Information Security” manual, the 34-page document that gives officials 19 categories to shield data from public scrutiny without obtaining a “secret” classification.
That runs counter to CDC’s mission, says Steven Aftergood, director of the Federation of American Scientists’ project on government secrecy, which first published the leaked manual on its Web site.
“The CDC is not the CIA,” Aftergood said. “Withholding data is not just bad public policy, it is bad science,” he said, because it impedes the processes of peer review and the scientific replication of results. He called the CDC’s policies “just baffling.”
Tom Skinner, spokesman for CDC Director Dr. Julie Gerberding, could not respond when asked about the manual on handling “sensitive but unclassified” information, which was released July 22, because he had not seen it. He asked a reporter to e-mail a copy to him.
Thanks for the post. Systems of recruitment, appraisal and promotion are designed to ensure that only people with adequate qualifications and experience get to work on important projects,or to exercise power. I would rather not want to undergo open source surgery. However, I think the premise on which you set out to criticize the wiki is wrong. You seem to assume that the wiki’s goal is to replicate existing information or to compete with the authority of public health agencies.
But that’s not the case.
Much of the knowledge the Flu Wiki community tries to gather has yet to be produced. Local authorities have no plans and are not prepared to respond to a public health crisis on the scale of an influenza pandemic.
But the problem is not only one of leadership failure at the local level, of course. As you can see on the WHO’s web site, more than 40 countries around the world have national contingency plans in place in the case of a pandemic. What about the United States?
Take a guess.
Or learn from today’s LA Times and from this commentary by revere (a FluWiki editor) on the effect measure blog that the United States is “rushing”, as it were, to complete its national (!) contingency plan ?- “perhaps this week”.
In the United States of America, a pandemic contingency plan does not exist as we speak.
Or read the Atlanta Journal Constitution or revere’s comments, again at the effect measure blog, to learn about the CDC’s failure to share flu data, meaning that flu researchers don’t know what sequences and samples CDC has or even how many. The US government and the health agencies of the US are effectively hindering vaccine development.
What is missing from this picture?
Transparency, accountability and leadership.
The FluWiki can be understood as an effort to develop different ways of organising and preparing at the local (your geographic location) and global (the internet) community levels, effectively bypassing the secretive hierarchies and unaccountable internal processes of failing agencies by capturing and sharing the insights that communities can bring to the table. The FluWiki does not contest the locus of decision making power or the legitimacy of the decision makers. However, barriers to involvement in decision-making processes should not be erected for political reasons. It seeks to encourage collaborative problem solving and to share a discussion about priorities and ethics in the event of an influenza pandemic.
I support the work that the Fluwiki site is doing. Without access to the healthcare system to which Americans have become accustomed-due to shortages of doctors and nurses from overwork, illness, death, or caring for their ill family members, we will be on our own to cope. We are so used to popping a pill and going back to work that the concept of caring for seriously, even critically family and loved ones for a protracted period of time, perhaps without reliable ulities, gasoline and food deliveries will be overwhelming! This is not mention the good possibility of watching people die without adequate medical attention, just as though we were in a third world country. A pandemic flu, whether it be avian or some other virus, will create this situation. there will be no one to sue, to blame, no one to rescue us. WAKE UP! We will need the truth, not the FEMA line of BS we watched during Katrina. We can teach, and learn from, each other. It’s time to lead, follow, or get out of the way.
Today’s WaPo has an instructive message:
get the message?
?? if you wish to do a grassroots effort, perhaps getting government sites, CDC, or WHO, or whomever in authority, to do better work, improve their sites, and become more helpful.. local or state government plans or discussions? encourage them at those levels.?
Thanks, David. This is actually a welcome and instructive dialogue. Since you’ve made a point of this, the genesis of pseudonymnity for some of us, whether we be health care professionals, library science folks, or housewives, is that we also do political blogging. CT, for example, is a small enough state that I, for one, choose to stay pseudonymous. I don’t believe, in the end, that the degrees or the credentials of the poster make something true or more true. In fact, inaccurate staments about bird flu and pandemics can be made by anyone, including public officials. And the assumption you may have that many behind the wiki are somehow not engaging CDC, state and local authorities on various levels is incorrect. There’s more than one way to do things, and on-line work does not preclude off-line work. There are many audiences to reach.
I still think you’re missing the point of the wiki. See my last comment and link… Mike Osterholm, in reviewing the CDC draft plan (all 381 pages and 10 appendices) suggests that cities, states, hospitals and municipalities will have to build some of these plans from the ground up. The wiki is not the only way to do this, but it’s one way… and a way to share what other folks in similar sized municipalities have done. The Flu Wiki also has an international audience.
See also this essay from someone with the credentials you seek (i.e., MD, WHO consultant). We’re not nearly as off base as you suggest. In the end, the wiki may not be where you choose to look for data , but in the end you may find that some of what the wiki and other sites and venues produce (ideas) gets to you from more acceptable (to you) sources…. and that would be a very satisfactory outcome for all of us.
Of course no one wants to minimize the risk of a pandemic… -OP
I presume you mean “everyone wants to minimise the risk of a pandemic.” The fact that your own post is significantly less polished and more error-prone than the Flu Wiki is a bit like your argument shooting itself in the foot, don’t you think?
As for the Flu Wiki, I believe it must be viewed with an informed eye. Much therein is largely supposition, however it appears to be intelligent and logical supposition. Such suppositions are made by all examining a particular issue, particularly including the highest in respective fields. Supposition, speculation and intelligent guesswork are the skeleton around which progress takes form.
The Wiki very much pays attention to worse-case scenarios. The likely course of events as I see it – and how the neccessity of the phrase ‘as I see it’ shows how in the dark we are as to the possible courses of events – is for the pandemic to be considerably less damaging than that of 1918. However, worse-case scenarios are those which most need attention paying to as the consequences of mismanagement, ignorance or unpreparedness are so much more dire.
I am of course wary of the fact the authors have not declared their credentials. However as the issue is a highly political one I would do the very same to preserve my own livelihood, as would any sensible person. Should no pandemic come to pass, any advocates of extreme preparation would be instant political targets. Perhaps they would be held liable for the high costs of preparation, in the political, media and career sense if not the legal one.
The possibility of a pandemic would become the stuff of jokes like the year 2000 bug. Any who publically supported sensible and moderate preparation for less likely, severe scenarios would be pilloried, due to the lowest common denominator hysterical feeding frenzy that is public life. Thus I cannot condemn the authors of the Flu Wiki.
If a severe epidemic does come to pass it may well change society significantly. It will most certainly make sweeping changes in the political arena. A severe pandemic would be a kind of political singularity past which no-one could predict. Again not disclosing one’s identity fully seems like a sensible precaution.
Cel Says: “I presume you mean ‘everyone wants to minimise the risk of a pandemic.” No, your presumption is wrong. If I said everyone wants to minimize the risk of a pandemic, I’d be saying that no one takes it seriously. Of course I should not be speaking in absolutes, so I should have said something like, Of course no one who’s studied the situation and is an expert in the subject wants to minimize the risk of a pandemic ….” Which is precisely what’s been happening over the past few years. Plans have been drawn up (however imperfectly drafted), antiviral drugs are being stockpiled, and new ones are being developed.
All the Flu Wiki has to offer that’s authoritative are links to existing sites or existing information on the impact of avian flu and human influenza that’s credited to epidemologists.
No one who is informed about the subject should be consulting a wiki for medical information — the publisher advises everyone in a medical disclaimer that the medical information can’t be trusted — and as for emergency services information, that’s why we have government and volunteer organizations that are more legitimate sources of information.
All the more reason then that the Flu Wiki team, given your own observations and forgiving attitude towards their anonymity (except for the publisher), should abandon their effort. Since the experts who are willing to stand up and be identified — they get paid to do that sort of thing — have already warned us what to expect, why should anyone pay heed to an anonymous group of editors?
Funny isn’t it how politics is often used as an excuse to avoid the sometimes negative consequences of public information. People who have the courage of their political and information convictions should not be afraid to be identified.
Actually, David, this last is an appalling ignorant remark.
No one who is informed about the subject should be consulting a wiki for medical information ? the publisher advises everyone in a medical disclaimer that the medical information can?t be trusted ? and as for emergency services information, that?s why we have government and volunteer organizations that are more legitimate sources of information.
Anyone who is truly informed about the subject has the judgement to look at Flu Wiki and judge whether or not the information therein represents the consensus of the scientific community on the subject. I guess that’s why I and my partners are being invited to consult with scientists and political bodies all over the country. I guess that’s why I’ll be consulting to the American Red Cross on risk communication and disaster platforms.
Your unwarranted antagonism is both unattractive and unneccesary. We’ve established our credentials with the quality of the information. I spent the day watching PhD scientists and MDs making complete asses of themselves all over the blogosphere. The credential is the quality.
Thanks for your comments Melanie. What exactly do you find appallingly ignorant about mirroring your very own medical disclaimer? The fact that you find my criticisms — hardly antagonistic or unwarranted — unattractive and unnecessary mean they must have some validity. What would constitute necessary and attractive criticism or even warranted antagonism? I think you’ll find my original post was relatively mild in its criticism. I felt I was being very moderate and constructive. I certainly wasn’t asking for a lot, just an endorsement or too from, say, the American Red Cross or WHO or the CDC. As you must know, I’m not the only information professional who finds the Flu Wiki a strange beast. The fact that your editors continue to hide their identities is your own worst enemy. I also don’t think you or any of the editors and your supporters have done a very good job of answering my questions and observations.
It’s not that I don’t appreciate and admire your efforts. I do. I just don’t think conveying medical or even emergency services information via an open wiki, especially since there’s at present no official government or private sector endorsement at any jurisdictional level, is not an ideal situation. Again, the questions of legitimacy, accountability and authority all come to mind, and are concepts librarians and other information professionals stress when it comes to accepting information on the Internet.
So if anyone who’s truly informed about the subject has the judgment to accept or reject the information on the Flu Wiki, why would they bother visiting and contributing, rather than just clicking on through to the many excellent resources you’ve assembled? Or just, as I suggested in one comment, Googling “flu site:gov” and getting the official views.
Again, you said it yourself in your “Are you a professional page?”: “The Flu Wiki is not intended to substitute advice from public health authorities or health care professionals.”
I’m glad your work is getting you some consluting contracts, but that’s really beside the points and issues I’ve raised.
As far as PhD scientists and MDs making fools of themselves all over the blogosphere, a degree doesn’t confer sainthood and since you haven’t provided a specific example, perhaps they were talking outside their specialization. We all make mistakes. But for scientific information to be accepted it’s subjected to testing, retesting and publication, which gives it far more credibility in my eyes, than information contributed by anonymous, pseudonymous and unverifiable individuals. If someone printed and distributed a monthly magazine or even a newspaper filled with informaton by anonymous contributors, how many subscribers do you think they’d ever have? Why do we insist on lowering our standards of information authenticity when it comes to the Internet?
I forgot to mention that I kind of guessed the source of your concern, Melanie, is that people Googling flu wiki see my blog’s post as the current number two entry, and perhaps after reading my blog this is causing people to ask more questions of you and your contributors. At least on Yahoo! Search, my blog entry doesn’t appear till the second page of results, which means most people probably don’t see it.
I go back to my last comment and stand by my comments (including enjoying the dialogue). Flu Wiki is noncommercial and none of its aspects are set up so that we get consulting contracts. Cel has it right re the intent.
Let me direct you to an article in the National Journal last week so you get the flavor of how local public health experts are going to be (and planning to be) overwhelmed by this:
—-
“By definition, a pandemic affects a vast geographic area and a huge number of people. Avian flu would spread fast and easily from person to person (especially in buses and other confined public spaces), since it is contagious before symptoms develop. By the time the first victims appeared, epidemiologists would have to presume that the flu had already spread far and wide.
“Every community in America would go on red alert. At that point, the federal government “can’t come in and take over,” Libbey said. “The math alone just doesn’t work.”
“The federal role in such a pandemic would be largely policy-oriented and advisory, Libbey and local health officials explain. The Centers for Disease Control and Prevention would issue technical advice to health care workers, such as what symptoms to watch for in the population, how to administer a vaccine or an antiviral, and which groups of patients should receive treatment first.”
—–
In a true pandemic we’re not counting on the feds, because the feds aren’t counting on the feds. The medical rx pages on the wiki are its least important aspect, though you focus on it. What will be more important are pages on how water and sewage and public utilities and small businesses plan to keep going when 20% of the workforce is sick, or whether CT (not yet published) can study NY and MA’s plans. With plan-o-rrhea (hundereds of them) it’s not such a simple proposition to find and look at the best state plans and crib if you’re a town or county official. And, btw, Canada’s and the UK’s plans are in some respects more robust than ours. They, too, are available for study.
You are focusing on the probable, which is we’re not going to all die tomorrow. As Cel suggests, we are focusing on the possible, which is to look at worst case and help public health authorities hep us. That’s why you buy life insurance.
Oh, another para from the Nat Journal article, even more to the point, where public health officials are more blunt:
“But beyond all that [vaccines and antiviral stockpiles], the federal government can’t provide much tactical help. “It’s every community for itself,” says Gary Oxman, the health officer for Multnomah County, Ore., which includes Portland. This comes as no surprise to local officials.”
You have a blog. If you knew that in advance, what would you do?
Thanks for your comments DemFromCT. My local daily newspaper (Times-Colonist) published an editorial on October 24 about the fear-mongering that’s going on regarding the possibility of a 1918 style pandemic. The editorial writer didn’t blame the private sector for this attitude at all, which is interesting considering the possibilities therein, and pointed the finger at public health agencies. Here are some quotes I found most revealing and echoing your own approach, which is basically to set off even more alarm bells than are necessary:
“No doubt there is a duty to draw attention even to hypothetical scenarios. But when officials use worst-case language as an attention-getting device, they undermine their own cause. Already pharmacists have warned that customers are buying up the drug Tamiflu, one of the few antivirals believed capable of combating avian flu. If there is an outbreak, the last thing we need is people randomly experimenting with medication that must be employed in controlled circumstances to be effective. Public health is in part a management science, yet what’s going on is not management, but fear-mongering. … What’s needed now is quet, behind-the-scenes preparation and public calm.”
Your publisher was the one who brought up the link between the Flu Wiki and “consulting to the American Red Cross” and other organizations. I assumed, perhaps mistakenly and if this is not the case I apologize, that she “and my partners” are getting paid for this work. It’s a red herring as far as I’m concerned and completely beside the points and questions I’ve raised.
Interestingly, the private sector is being blamed for building stockpiles in the halting of tamiflu sales to the US and Canada, not individuals.
“These purchases have been for large enough quantities that we’re concerned about hoarding of the drug in general, whether for seasonal flu or a possible pandemic,” said Darien Wilson, a spokeswoman for Switzerland-based Roche’s U.S. offices in Nutley, N.J.
Wilson said the large purchases have been by private companies, which Roche has not named. Doctors said there also has been an increase in demand for the drug among patients.
And, by the way, Flu Wiki has never advocated stockpiling tamiflu. Individual opinions vary on and off the wiki; personally I advise against it. The point is to educate oneself about the issues, so that you become aware, e.g., that your state health department may advise against stockpiling (unless you live in VA) while WHO has advised its employees to do the opposite (stockpile for themselves and their families), and on the third hand your own MD may not have even considered the issue – and won’t until advised to do so by the CDC, whose draft plan remains unreleased. All the preceding is accurate.
Do be careful to avoid Argumentum Ad Verecundiam. When authoritative sources vary in their advice, becoming educated on the issues (with references) can only be a plus. That’s not fear-mongering, that’s prudence.
I long reply to your concerns is up at Effect Measure.