Watching the goings-on this week at the HHS Pandemic Flu Leadership Blog and the impassioned “behind the scenes” discussions at a couple of pandemic flu message boards (PFI Forum & Flu Wiki Forum) brought to mind the analogy of how residents of Los Angeles and the San Francisco Bay Area think about each others’ cities. In my experience living in both regions, I’ve found that people in the Bay Area are somewhat disdainful of LA and feel an intense rivalry with their southern neighbor, while Angelenos don’t give much thought to anywhere north of Santa Barbara. Substitute HHS as the clueless colossus, and the “flubies” (concerned citizens that have been thinking about and preparing for pandemic flu for a long time) as the hypersensitive underdogs.

When the HHS blog began, there was hope on both sides that the process would result in public participation and dialogue about pandemic flu issues. HHS has gotten that in spades, but it might not have been in the form they envisioned. Each of the blog posts by the various government and other sector participants has garnered vast numbers of comments (as many as 152 on a single post, though most are getting somewhere between 20-50). Sounds like a lot of public participation, doesn’t it? It turns out that the vast majority of the commenters are flubies, many of whom are slicing and dicing the blog posts based on their own extensive knowledge of the issues and what they think is necessary for the country to be prepared if a pandemic strikes. They are well-informed and have obviously thought through the key points they want the government to take into account as it sets its pandemic flu policy.

The main point that the flubies are trying to push is that the current government recommendation of stockpiling a 2-week supply of food, water and medical supplies is woefully inadequate based on current knowledge of how infection cycles and supply chain disruptions will likely happen, and should be closer to 8 to 12 weeks worth of supplies. They feel that HHS is downplaying the need to prepare and not taking worst case scenarios into account.

When the HHS blog was announced, many were cautiously optimistic that they now had a seat at the table, and that they would actually be engaging in a conversation with the policymakers. But when HHS Secretary Mike Leavitt did not respond to the comments on his posts, some took it as a sign that he was not listening. And when some moderated comments either did not show up on the blog or took a long time in appearing, elaborate theories as to which words or topics were being censored started coming out. Some tried to read between the lines of others’ comments, wondering if they were HHS plants who were testing how much the flubies knew and how they would react to various communication approaches.

The proverbial straw came in Week 3, when Admiral John O. Agwunobi, the Assistant Secretary for Health at the HHS wrote a blog post reiterating the government’s recommendations for stockpiling that came across to many as patronizing and dismissive. The poor guy didn’t know what hit him, as enraged flubies unleashed their anger, sarcasm and finely reasoned arguments in the comments. Amongst themselves in their own forums, the attacks were even harsher. (Fla_Medic has a good summary of the situation on the Flu Wiki.) Admiral Agunobi later wrote a second post sharing his surprise that his words had sparked such a strong response, and he backpedaled somewhat.

I have a feeling that HHS is getting more than it bargained for with this blog, and the question is what they will be doing with all of these comments. Will they stick with a predetermined set of recommendations, or will they take the valuable input of people who have thought through in painful detail what they need to do to protect their families and communities if and when a pandemic strikes? Tomorrow (June 13) is the HHS Pandemic Flu Leadership Forum, where they will be discussing policy recommendations, and it will be interesting to see the direction the conversation takes. Greg Dworkin, who runs the Flu Wiki and its forum, will be speaking at the event and presenting the flubie community’s concerns. The Forum is supposed to be liveblogged, though I don’t know who will be doing that on site.

While I wasn’t invited to come to DC to participate in person, my contribution to the HHS blog this week came out of my dismay at the fact that these true community leaders have been mostly ignored, when they are the best natural resource the government has in spreading the word at the local level. I’m advocating a dual-pronged approach to building public awareness by combining a government-led education campaign with a program cultivating and supporting the grassroots activists through the social marketing equivalent of a “brand ambassador” or “customer evangelist” program. My strategy seemed to resonate with the flubie community. The worst thing HHS could do would be to ignore, or worse, alienate this network of people who feel passionately about the issue. Read the post and let me know what you think about my recommendations, either here or there.