Pandemic planners urged to tap grass roots

Maryn McKenna

Apr 17, 2007 (CIDRAP News) Governmental plans for an influenza pandemic are missing an important opportunity to improve US preparedness, according to two new reports: They are not reaching out to communities and grass-roots groups that could refine plan details and increase public support.

Meanwhile, ad hoc communities and preparedness alliances are formingin the real world and onlinewith minimal input from government planners. And, confirming the reports' concerns, some members of those communities say they have networks and resources to offer to official efforts, but are frustrated by their inability to make themselves heard.

The first report, "Community Engagement: Leadership Tool for Catastrophic Health Events," was published Apr 4 by the Center for Biosecurity at the University of Pittsburgh Medical Center (UPMC). The report, which sums up the findings of a 27-member panel convened by the center during 2006, asserts that official planning incorrectly assumes the public will panic and create a "secondary disaster."

"The civic infrastructurecomprised of the public's collective wisdom and capability to solve problems; voluntary associations (both virtual and face-to-face) that arise from shared interests or a public good; and social service organizations that look out for the well-being of various groupsis essential to managing a mass health emergency," the report says.

"US homeland security and health emergency policies, however, do not adequately reflect the civic infrastructure's proven contributions in catastrophes. Nor have most top officials yet realized the potential value for local and national communitiesand for themselvesof preparing knowledgeable, trained networks of constituents who can mobilize in a crisis."

More than stockpiling
In an interview, lead author Monica Schoch-Spana, PhD, a senior associate at the UPMC center and chair of the panel, said that official planning addresses civic divisionsstates, counties, cities, and townsand then makes a long leap to individuals and households. In that leap, she said, the plans ignore the many relationships that knit together civil society and that could be used to enhance preparations before a crisis and disseminate information and organize action during one.

"If you just define citizen preparedness as stockpiling, you are only giving people limited options," she said. "There is a wide range of contributions that citizens can make, to prepare for, respond to, and recover from extreme events."

The second report, "Citizen Engagement in Emergency Planning for a Flu Pandemic," was published Apr 13 by the National Academies Press and sums up the findings of an Institute of Medicine workshop held Oct 23, 2006. It says that seeking community input about policy decisions and setting up channels through which residents can talk back to government has been critical to the success of recent environmental-action and public-health campaigns and should be folded into pandemic planning as well.

The report quotes Jason Corburn, assistant professor in the urban planning program at Columbia University, New York City: "Engaging community members and their knowledge about how they move through the world, and what they know about their disease management and exposure risks in their community, can contribute to better science and policy."

Tapping communities' self-knowledge, rather than dictating to them, ought to be an essential component of pandemic planning, said noted risk communication expert Peter Sandman of Princeton, N.J. (Sandman serves as deputy editor of CIDRAP News' sister publication, CIDRAP Business Source Weekly Briefing.)

"The rational planning unit is the neighborhood," he said in an interview. The ideal planning unit "wants to be geographically compact, it wants to be something with more storage capacity than individual homes, and it wants to be something that, when government has its hands full, can be autonomous."

But few top-down pandemic plans have approached neighborhood organizations or examined the potential of neighborhood gathering places such as firehouses and American Legion halls, he said.

Seattle and Berkeley reach out
A few jurisdictions around the United States have reached out on their own to local communities and grass-roots networks. The SeattleKing County Health Departmentan agency that is widely considered a national leader in pandemic planningcreated a Vulnerable Populations Action Team after seeing the extraordinary difficulties that Hurricane Katrina brought to the Gulf Coast's elderly, disabled, impoverished, and undocumented residents.

The health department has reached out to leaders and advocates in community-based agencies and is using the new contacts both to hold planning meetings with marginalized groups and to understand the groups' social organization, said regional health officer Sandy Ciske. The effort has already produced some gains. When unusually high winds last December caused lengthy power outagesand subsequent deaths from burning charcoal indoorsthe health department warned recently-arrived African immigrants of the danger by giving flyers to men from that community who drive taxis in downtown Seattle.

The government of Berkeley, Calif., has capitalized on its community's intense political involvement by deploying campaign techniques to distribute health information. Last May, the city of 103,000 used 250 volunteers to hang disaster-information kits on 25,000 doorknobs; next month they plan to distribute pandemic-flu planning information the same way.

The city government has reached out to neighborhood disaster teams, hoping to add pandemic planning to their long-standing training in earthquake and wildfire response, and is beginning to talk to religious organizations and neighborhood-watch groups, said Assistant City Manager Arrietta Chakos, who participated in the Working Group on Community Engagement in Health Emergency Planning, the panel that produced the UPMC report.

"It really helps when government people go into the community and use the meetings and gatherings that already exist, rather than convening special city government town halls to communicate information," she said. "The more we meet with our neighbors in settings and forums that they convene, the more the message gets communicated that we want to work with groups that are functioning in effective and healthy ways."

Initiatives in cyberspace
Few political jurisdictions, though, have gone as far as Seattle and Berkeley in forging community contacts. In areas that have not, some existing community groups and some newly formed ones are acting on their ownface-to-face, or in the borderless meeting places of cyberspace.

In central Florida, retired paramedic Michael Coston has started an "adopt a first responder's family" campaign, which he promotes through his blog, "Avian Flu Diary." In the 16 months he has been blogging, Coston has seen his 300 daily readers shift from being interested only in preparing their families to being willing to share community preparations.

"My whole point in blogging has been to say that people need to band together to work through a pandemic," he said in a phone interview. "We can't say, 'Too bad about the guy across the street; I've got mine.'"

The central cyber-site for pandemic planning is the FluWiki, a sprawling collection of thousands of collectively assembled posts that has garnered 1.5 million visits in its 22 months. In FluWiki's earliest days, participants anonymously shared advice about preparing their own households, said Dr. Greg Dworkin, a pediatric pulmonologist in Danbury, Conn., who is one of the site's volunteer editors under the name "DemfromCt."

But in recent months, he said in a phone interview, participants have begun reaching out to each other through pages dedicated to US states and foreign countries and have begun sharing strategies for area preparation and for communicating with public health agencies and local governments. At the same time, a few planning agencies have begun using the site as a resource; the New York State Department of Health, he said, posted its draft guidance for using scarce ventilators during a pandemic to the FluWiki before the document's public release.

Many FluWiki members remain cautious about revealing their real-world identities, Dworkin said, because they fear it may put their personal preparations at risk. "They've all had the experience of trying to be a bit of an evangelist about stockpiling at least 2 weeks of food and water, and having a family member say, 'Great, now I know whose house to go to,'" he said.

Other cyber-organizers say their readers fear being thought of as alarmists. "They go to their town council and no one wants to hear it; they speak to the chief of EMS and get tagged as a crazy person," said Debi Brandon, a former police officer in coastal South Carolina who reaches out to law enforcement and first responders through the blog "Bird Flu Journey."

Connecting top and bottom
The lack of successful connection between top-down official planning and bottom-up citizen activism is one of the most frustrating features of pandemic planning, said Crawford Kilian, a professor at Capilano College in British Columbia who operates the highly regarded flu news site "H5N1."

"[Official plans] look to me like a 60-foot rope hanging from the top of a 100-foot cliff," he said in an e-mail interview. "The bureaucrats have done their planning without really thinking about what the rest of us are supposed to do to make the plan succeed. . . . [But] in fairness, the officials probably aren't finding many grassroots/ad hoc groups to link up with."

There is a risk that the official and activist sides could simply plan past each other, with neither side accessing what the other has to offer. That must be avoided if pandemic planning is to work when the crunch comes, said Schoch-Spana, whose paper includes a list of recommendations for officials.

"We would like health officials and mayors and governors to reach out to the community . . . and to provide political support and visibility," she said. "But community-based organizations shouldn't wait to be invited to the table. They should be asking for advice on how they can maintain their operations during an acute emergency, so that their members can be taken care ofbut they should also be offering themselves as a community asset."