Flu Wiki 2 | Forum / CDC Recognizes the Blogosphere

16 October 2006

anon_22 – at 08:21

This is by revere at Effect Measure, re-posted here with permission:

Our Flu Wiki partner, DemFromCT, has an important post up at DailyKos today. In June of 2005, Dem (The Next Hurrah), Melanie Mattson (Just a Bump in the Beltway) and The Reveres joined forces in an experiment in community public health planning we called The Flu Wiki. We were joined by our tech guru, the blogger, pogge (Peace, Order and Good Government, eh?), and after a time by anon_22. Anon_22 was “just another” wiki participant who chose her name arbitrarily, not thinking she would become a central figure. Based in the UK, she is a physician and soon became deeply engaged in the discussions that went on at the Wiki. Now she shares moderating duties with Dem and Melanie (The Reveres are still active with Wiki policy but spend their available time here at Effect Measure). This is just the way we wanted the Wiki to work and Flu Wikians have formed all sorts of autonomous affinity groups, one of which is responsible for the current Flu Pandemic Awareness Week. You can read some of the history of The Flu Wiki here, recounted in a reply we made to a librarian who challenged the authority of this kind of new media.

As DemFromCT notes at DailyKos, that battle is now decisively over with:

One of the interesting things about blogs, wikis and “new media” (aka Web 2.0) is its ability to influence dialague and narrative way beyond the number of readers of a single post. Peter Daou (now working for Hillary Clinton) wrote this up in what he called Daou’s Triangle: media reads blogs, and the politicians and parties (and their staff) read media, while blogs write about politicians and parties. There are limits to this, of course, but there are also broader applications.

[snip]

Well, a year later, we’ve been cited by Science, the World Bank, BBC, PBS, WHO (to name a few) and this week, by the CDC [who has just started a blog of its own].

Above and beyond real-time information gathering and message dissemination, the social and community qualities of new media can advance health and risk communication by changing how we understand our problems and how we construct our solutions. News groups, chat rooms, and bulletin boards have been used for exchanging health information and as online support groups since the earliest days of the web. Today’s Web 2.0 tools that leverage and harness the “knowledge of the crowd” offer great potential for solving our most difficult public health problems and building and empowering communities of change. One great example is FluWiki, whose stated purpose is “to help local communities prepare for and perhaps cope with a possible influenza pandemic, [which is] a task previously ceded to local, state and national governmental public health agencies.”

Controlling and mitigating public health emergencies, especially those that are the size and scale of an influenza pandemic, will absolutely require the active engagement and participation of the public and all sectors of society. New media efforts to engage and galvanize the public like FluWiki, Green Hammer, and the Slidell Hurricane Damage Blog are critical to CDC’s ability to prepare for and respond to an influenza pandemic and to other possible public health emergencies. (CDC)

So CDC is finally catching on. They recently participated in a panel discussion on new media and their implications for Federal health communications programs. Here’s some of an account by one of the participants, Craig Lefebvre, whose blog Social Marketing is a wealth of interesting information on the new media and health:

The invited audience consisted of HHS health communicators including people from five Institutes at the National Institutes of Health. From past reactions I have received on social media from people involved in both federal and state health programs, I was especially interested in the participants’ reactions and comments during these 3 hours of presentations and discussion. Here are my notes:

*An immediate response was that moving into places like MySpace and YouTube (two examples I used in my talk) meant that even more time and investments would be necessary to develop effective messages for these new channels. One participant who works in the substance abuse area talked about the difficulties they were having with pro-marijuana and drug use people hijacking their sites and messages, including on-going debates with editors of Wikipedia over the slant being given to some drug entries. The notions of transparency and audience-generated content as being realities of these new media were recognized and accepted by many people in the room, but moving from linear, one-way communication models to more networked models of communication is going to be as difficult for them as it is for many companies and agencies.

*The question was raised about what the role of the Federal government should be as a source of health information in this new world? Can it be effectively positioned as an arbiter of ‘truth’ and science? Or is it going to be one of many (hundreds?) of voices competing for people’s attention and trust? What does the trend of democratization of information portend for communications planning and health communications and social marketing programs? How will social networks play a role in assessments of credibility and trustworthiness? Monitoring this new environment (blogs, social network sites, Wikipedia) was also pointed to as a new task for these offices that would require attention.

*The issue was also raised about how to ‘push’ or direct people towards health information once it was made available in social networks and other types of social media (for example, a specific health campaign’s materials). We began focusing on the need to switch the orientation from an ‘outreach’ to an ‘inreach’ approach to health information and behavior change dissemination that emphasizes discovery of information when and where people are interested in it and looking for it.

*A concern was expressed by researchers that submitting investigator-initiated grants to the NIH to conduct research with new media and technologies has been met many times by rejection by peer review committees whose members are not conversant with these technologies. It was felt that this lack of expertise and experience on these review committees (whose members determine to a large extent whether grants are funded or not) may imperil opportunities to understand and best utilize these new media in health communications and behavior change efforts.

*Some participants also shared how they have been tapping into thought leaders from the commercial world to introduce ideas and new technologies to the executive level staff at some Institutes. I believe a shared feeling was that this type of cross-fertilization and exploration of new ideas had to become more commonplace at NIH. As one participant put it, the NIH is renowned for its curiosity and research into new ideas and approaches to health and disease; this attitude needs to be equally applied to issues in health communications, behavior and new media.(Social Marketing)

These are mostly good developments. The last bullet point, above, is somewhat worrisome, however. The commercial world tends to be behind the curve, not ahead of it. Being ahead of the curve in a world where things move as swiftly as new media is essential. Unfortunately, this attitude of the federal health communicators is another example of a charcteristic tentativeness at a time when decisiveness is more appropriate.

But we’ll take what we can get. We welcome CDC to the Blogosphere.

DemFromCT – at 09:34

Just as in PFAW, we need to involve livejournal, MySpace, YouTube (video), etc. if we want participation.

DemFromCT – at 12:47

bump

anonymous – at 12:56

Dr Dave – at 09:42 Would you send me a copy also? ssol1232000 at yahoo dot com

Thank you.

DemFromCT – at 20:04

bump

17 October 2006

lugon – at 03:53

The original story is here, with comments.

Specially important to read are mpb’s comments which I copy below - thanks for the specific permision.

I’m disappointed in what CDC (and UNC) has done with the PanFlu webcast and interactive forum. Webcasts are always a problem for those of us on dial-ups (although this was not too bad).

The presentation was a good concise summary. However, none of the questions submitted for the hour’s webcast were transferred over to the forum. The forum was not really prominent; few used it (maybe few knew of the webcast) and interest quickly died. It seemed to be (was presented in a manner of) a one-off.

Public Health Grand Rounds PanFlu

The other problem, which goes to the larger issue of who prepares and who uses the “social” Internet for preparedness, is that none of the discussion is about communities driving the inquiries; what happens if one doesn’t have advanced governmental capacity in health (e.g., most tribal governments and frontier and remote communities. NC and California and Wash state are not frontier governments); if schools have not trained a critical thinking population? We seem to have a huge number of MySpace users (300+?) given our regional population (20,000) but no one uses it to ask why the Fire Chief doesn’t think preparation is useful or to ensure the designated City Council member shows up for PanFlu briefings or to call the “Bird Flu Hotline” to find out if they know how to answer the phone.

There is a scale factor also— a thousand people urging city hall to do something in Boise or NY state or Des Moines can be heard; but the comparable number for us is something like 1 or 2.

1 or 2 people without complementary resources are not effective.

Web 2 is only a component of communication. Ironically, many traditional communities have a long history of complex non face to face communication; very few institutions have been willing to look at how that works in order to make the Internet more effective.

CDC may have a blog now, but public health agencies and academic departments and NGOs still operate from the top down and require supplication from communities. There are 2 main problems with this approach—the science and health is incomplete, by definition, without the other experts fully involved and 2) it’s us who are frontier not only in sparse population density (400 miles from Wal-Mart; 3000 miles from the nearest active nuclear test-site) but we also are the first to spot many environmental and infectious illnesses, before it hits suburbia.

So, how to press the Feds and states and tribes and universities to get going?

Posted by: mpb | October 15, 2006 07:16 PM

mpb: Good points, all. Have you raised them over at The Flu Wiki?

Posted by: revere | October 15, 2006 07:36 PM

Unfortunately, I haven’t had the time yet to figure out wikis so that I would be contributing and not occupying electrons.

[One other thing I forgot to mention was trying to get updated test results. The US Fish & Wildlife S site does not identify how to sign up for news releases; there are no feeds for them, either, as far as I could figure out. After all the hullabaloo about the bird testing, the only way I could find and post results (days or weeks before the state and local news media) was via Google news searches, which I then had to track down to verify.]

Posted by: mpb | October 15, 2006 11:40 PM

mpb, can I copy your message above into http://www.fluwikie2.com/pmwiki.php?n=Forum.CDCArticleOnNewMediaAndFluWiki please?

For those here who may not know, there are two different things over at Flu Wiki: One is wiki pages, our structured information space, with pages full of content and links, at fluwikie.com. The other is the forum, our conversation space, with sequential postings in which people start or follow a conversation, at fluwikie2.com. You need not use any sophisticated mark-up language to contribute to the forum!

Sometimes wiki pages and forum threads are linked to each other. A small example is http://www.fluwikie2.com/pmwiki.php?n=Forum.LengthOfDisease which is linked to and from http://www.fluwikie.com/pmwiki.php?n=Consequences.PandemicWaveInASpreadsheet

Things sort of feed into each other quite nicely. We help the CDC and they can use the Flu Wiki. The enemy is out there, and so are the oportunities.

Posted by: lugon | October 16, 2006 06:36 AM

mpb

“Unfortunately, I haven’t had the time yet to figure out wikis so that I would be contributing and not occupying electrons”

Just a quick response to let you know that the easiest way to contribute to the FluWiki is to go to the forum http://www.fluwikie2.com/index.php?n=Forum.Forum and post comments, which you can do at the bottom of any discussion thread, pretty much like this one. Comments are read by a lot of people and useful ones are often re-written to the wiki by others, either by request of the author or just spontaneously!

Posted by: anon_22 | October 16, 2006 07:10 AM

Please do. If you can keep the link to http://ykalaska.uniblogs.org I’d appreciate it.

Regarding academics vs governmental openness to technology (ideas)-- I have experience on all sides. The intellectual diffusion is mostly in one-direction (circular and digging ever deeper). Some disciplines are worse than others. I am comfortable stating that the absolutely worse situation was as a tribal scientist in remote communities dealing with CDC, ATSDR, EPA, UC-LANL, UAF, states of Alaska and NM, et al. But it barely surpasses the academic and research lithifications (I’ve had an NIH proposal ranked high enough to fund that year but yet be the only one not funded, a decision made at the director’s level on academic field of study grounds.) Those most open to new ideas have been those, such as secretaries, lab techs, unpaid custodians and health eds who don’t have status to lose.

“Rural Charm”

I wrote this summary based upon experience in the highway department as the public involvement coordinator (NEPA requirements, when paper ruled). As institutions learn to respond to the Internet, they will similarly learn to respond only to those who know how to supplicate the system. We don’t have collaboration with communities as colleagues. We “venture out” not live amongst.

Intellectual heterosis works, but it is often difficult to be that courageous.

Posted by: mpb | October 16, 2006 07:18 PM

lugon – at 03:54

There are other comments but I didn’t copy them over.

mpb – at 16:11

http://cerebraloddjobs.edublogs.org/2006/01/11/rural-charm/ “Rural Charm”

cactus – at 16:22

 See, mpb, that wasn`t so hard,was it?

 Welcome.

24 October 2006

mpb – at 17:06

This discussion about Google news now presenting blogs as news sources, http://lorelle.wordpress.com/ http://tinyurl.com/yxhf5q might be apropros (whatever) because I’ve been using the news alerts for understanding risk communication and perception (and because we do not get the results back from our birds).

Recently, there has been an escalation of Birds! Alaska! death! because of the LA Times article which was morphed through what Google calls news into Birds! Alaska! Eskimos cause Death! [and once again Government-doctors-health-unsuspecting Natives/minorities]

Could be interesting for someone to examine this phenomenon. We once relocated the Aleut/Unangan for the public good (WWII) and others (TB in the 1950s and 60s). There are enough government conspiracies about H5N1 and enough ethnic prejudice already.

31 October 2006

mpb – at 16:45

Goggle maybe news continues. I’ve posted the summaries at the original blog, Lorelle vanFossen http://tinyurl.com/yxhf5q

Google news alerts are now alerting to comments in blogs about Google news presenting blogs as news sources….

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