Government ‘takes a shot’ at inviting citizen input

SCRC helps organize deliberation on pandemic flu vaccine policy

by Julie Fanselow

February 27, 2006 | | Atlanta, Georgia

Study circles organizers know the power of gathering people from diverse backgrounds to talk about local concerns. But could democratic deliberation help a vast federal bureaucracy hear citizen voices on a pressing national issue?

That’s exactly what happened when the Study Circles Resource Center recently helped produce the Public Engagement Pilot Project on Pandemic Influenza, or PEPPPI. More than 100 Atlanta-area residents met for a daylong event to discuss and rank goals for the Department of Health and Human Services’ pandemic influenza plan.

The public session in Atlanta came between two meetings of a 50-person national stakeholders group representing organizations interested in pandemic flu. Citizens from three other states – Massachusetts, Nebraska, and Oregon – also had opportunities to comment on the Atlanta citizens’ findings and the stakeholders’ reports. In the end, the citizens and stakeholders group agreed that “assuring the functioning of society” should be the top immunization goal, followed by reducing individual deaths and hospitalizations due to influenza.

Making it happen

The initial drive to involve citizens in some vaccine-related policy decisions came from Roger Bernier, a researcher for the Atlanta-based Centers for Disease Control (CDC). Bernier has frequently been in the crossfire between government immunization policy and activists concerned with vaccine safety, particularly the relationship between vaccines and autism. In 2001, while Bernier was testifying on Capitol Hill, an autism advocate dismissed CDC’s research as “dead on arrival” simply because it came from the federal government.

“It was a wake-up call to me, reflecting a fundamental distrust between our agency and some segments of the public,” Bernier recalls, adding that he realized then that “building trust wouldn’t happen through more research.” The scientist began seeking ways for people on opposite sides of an issue to get to work together. “I asked myself, ‘What kind of work do we do at CDC that’s shareable?’” Bernier says. Vaccine policy emerged as one area that’s not exclusively technical, but also informed by social values, and thus ideal for citizen input.

Bernier asked his boss for a sabbatical and attended a Kettering Foundation-led Public Policy Institute program in suburban Cincinnati, Ohio – an experience he calls ”the beginning of my travels in the democracy zone.” Eager to create a new model for public engagement on government policy, he worked with The Keystone Center– a Colorado-based organization skilled in dialogue and collaborative problem solving on matters of science and public policy – and people from a variety of vaccine stakeholder groups to convene a session at Wingspread, the Frank Lloyd Wright-designed home-turned-conference site at Racine, Wisconsin. Bernier says they deliberately chose the inspiring setting to signal “this was not business as usual.”

The resulting proposal for a new public engagement process involving both citizens and professional-governmental stakeholders was forwarded to National Vaccine Advisory Committee for review. There, it received what Bernier calls a “polite but not enthusiastic reception.” But the ad hoc steering group – later known as Racine Sixteen, of which Study Circles Resource Center Senior Associate Matt Leighninger was a part – did not quit there. They stayed connected and remained watchful for an opportunity to test their ideas.

The group saw its opening when, in the spring of 2005, the Department of Health and Human Services’ first influenza pandemic plan did not adequately address how meager supplies of flu vaccine would be distributed. The Keystone Center suggested a grant it had received from the Richard Lounsbery Foundation might be used to bring together citizens and stakeholders to address those gaps, and the PEPPPI was born.

A day of dialogue

The Keystone Center, in collaboration with the Study Circles Resource Center and Kathleen Stratton from the Institute of Medicine (an independent advisory organization), co-organized the pilot public engagement project, while Bernier (Bernier's welcoming remarks) and Edgar K. Marcuse of the University of Washington and Children’s Regional Hospital & Medical Center in Seattle co-chaired the stakeholders’ sessions. Mary Davis Hamlin, senior associate for The Keystone Center, says SCRC’s expertise in large-scale community dialogue was a key piece of bringing the citizens together in Atlanta and the other regional sites. Leighninger wrote a dialogue guide for the one-day event, and SCRC asked Senior Associate Jon Abercrombie to serve as lead recruiter, community organizer, and facilitator in Atlanta.

More than 100 citizens were asked to join the discussion, including many people who’d previously told the Atlanta Journal-Constitution newspaper they were willing to offer input on important topics. Participants ranged in age from 18 to 78, with racial and gender diversity. Free parking and onsite childcare helped ensure a good turnout, too.

First, the group spent about 90 minutes learning about pandemic flu and the federal government’s decision-making processes. Next, they used exercises to dissect and discuss values that might inform their own decisions. For example, they were told, imagine you are a doctor with 100 patients, 50 of whom would need two doses of vaccine to be protected, and 50 who’d only need one dose. You have 50 doses, and you can’t get more. How would you decide how to allocate the available vaccines?

After lunch, the participants tackled possible pandemic vaccination policy goals. In addition to the favored two options – limiting the larger effects on society and reducing individual deaths and hospitalizations – choices included putting children and young people first; using a lottery system; or adopting a “first-come, first-served” policy.

Hamlin says observers from the medical and science communities were pleasantly surprised by the day’s energetic, upbeat tone. “Their experience with the public was always in shrill public hearings, after issues had escalated,” she says, but here they were able to understand that “people are typically very constructive and respectful and wise.”

“Some of the officials were skeptical about whether citizens could say anything intelligent and helpful, so the fact that the citizens and experts came to many of the same conclusions was big news,” Leighninger says. The day wound up with discussion on possible ways to prevent or at least contain a pandemic.

Getting public input on the radar screen

Leighninger says that while the federal government has frequently solicited citizen input in local decisions (environmental impact statements, for example), the PEPPPI represents one of the few instances where at-large citizens were involved in helping shape policy for a national issue. But in an Atlanta Journal-Constitution article the day after the event, reporter M.A.J. McKenna wrote that some participants “left the meeting skeptical that their efforts would make much difference.”

     “People are always skeptical, and for good reason, over whether their input will be taken seriously,” Leighninger says. Abercrombie adds that organizers “helped people with those feelings speak out and be included in the record of what happened, so their feelings were honestly heard.”

     Bernier says a Department of Health and Human Services representative was on hand for the event, and that the National Vaccine Advisory Committee has created a communications and public engagement subcommittee, helping to institutionalize the idea of public input. ”It does show public engagement has gotten on their radar screen,” says Bernier.

The deliberations also won a brief mention in the final HHS report on pandemic flu plan: “HHS has recently initiated outreach to engage the public and obtain a broader perspective into decisions on priority groups for pandemic vaccine and antiviral drugs. Though findings of the outreach are preliminary, a theme that has emerged is the importance of limiting the effects of a pandemic on society by preserving essential societal functions.”

“I think that statement is the only concrete evidence we have that we were taken seriously,” Bernier says. “(But) the evidence does suggest we definitely did get consideration.” The report indicated that HHS realized it had too narrow a view, “and it needed a wider-angle lens,” Bernier notes. The PEPPPI findings provided that broader view. In addition, Bernier says CDC Director Julie L. Gerberding has reviewed the report and expressed strong support for using its approach on other issues.

The public engagement pilot project organizers aren’t yet sure where the model might be used next, but they are watching for opportunities. Bernier continues to work within the CDC to promote more citizen input, and says he’s “cautiously optimistic” that the government will invite more public engagement on policy decisions in the future.

“This is hard,” says Bernier, adding that he often feels like he’s been pushing a rock up a mountain for years and he’s still nowhere near the summit. “This is about paradigm change, and therefore there is no groundswell of interest for this in the vaccine or public health science communities. I don’t really know how it’s going to turn out,” he added.

He suggests that study circle proponents and others in the civic engagement community need to lead the call for the government to use more public input. “I love my friends in the public engagement world, but where are they?“ he asks.

“I think people could be pushing this and saying ‘What about this? Isn’t it great? How else could it be used?’” Public engagement pros, he adds, ought to be “banging on the doors … to take this successful experiment and call for more.”

Meanwhile, Leighninger says this experience was a good example of how the relationship between government and citizens is changing in fundamental ways – a topic he addresses in the forthcoming book The Next Form of Democracy: How Expert Rule is Giving Way to Shared Governance - And Why Politics Will Never Be the Same. People are better connected, organized, informed, and willing to challenge government. “Federal officials may not realize it yet,” Leighninger says. “But they really can’t operate like they’re the only ones on the stage anymore.”

While the Study Circles Resource Center primarily focuses its resources on building local democracy as a strategy for strengthening national democracy, we welcomed this project as an opportunity to apply processes we develop at the local level to a national issue.