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The Public’s Take on ‘Who’s First in Line for Pandemic Flu Vaccine?’ Roger Bernier, PhD, MPH Speaker biography | Summary | Panel agenda Transcript
Denise Gray-Felder (Moderator):
Okay, next we have Roger Bernier who is currently with the Centers for Disease Control, Co-chair at the Public Engagement Pilot Project on Pandemic Influenza, and Senior Advisor for Scientific Strategy and Innovation. Roger? Roger Bernier:
Good morning! As a scientist at the Centers for Disease Control, part of the way I got into this was a little bit abrupt. I was testifying at a Congressional hearing when one of these citizen advocates told me that my research from CDC was dead on arrival. My reaction was, “Atlanta, we have a trust problem!” Because it didn’t seem to me that more research was really going to help the situation. So, it was a wake-up call for me that, really, facts do not always speak for themselves and that values are also important, at least for some science-policy questions. I am not proposing public engagement on which flu virus we should put in the next year’s flue vaccine. But I think there [is] a subset of science-policy questions where we basically need to try and pass two tests: we need to get the science right, but we also need to reflect the right values. Another interesting framing for this issue is to think about this (at least for scientists)…I think this is potentially more attractive, that we have a “know-do” gap, if you will. It’s kind of the challenge of knowledge translation. What we know does us no good if it isn’t put to use. And if we can think of public engagement as a strategy for solving this “know-do” gap, I think this is one way of appealing to people who are primarily oriented towards evidence. In any case, this was a beginning for me of a journey in a democracy zone. [These are] travels that really haven’t ended yet and it has been a very fascinating journey. I’d like to begin with the quote which I think summarizes part of the motivation for this: “When big things are at stake, the danger of errors is great. Therefore, many should discuss and clarify the matter together, so the correct way may be found.” And for me, one of the most astonishing things in that is not only the wisdom of it, but the date of the quote, which is over 1400 years old. Well, one of the things that we were able to accomplish in this exploration is an actual testing of a model that we had developed a couple of years ago. And the first, real-life, policy issue that we addressed was the issue facing us about ranking priorities for the use of limited supplies of pandemic flue vaccine. The question we posed was, “Who first will we vaccinate against pandemic influenza when vaccine supplies are limited at the outset of the pandemic?” Now, the key features of this model and this project—and this is a condition that I added recently—
[is that] there shouldn’t be too much polarization. On the other hand, there needs to be some difference of opinion. Otherwise, it may really not be worth doing. So, I think there are a vast number of questions in this middle zone where we do have differences of opinion and where, I think, this kind of approach can be helpful. As I said, this is not for all issues, but with issues where values are at play in the decision. The model we use is the one which involves both stake-holders—that is, people who belong to an organization or represent organized interests—as well as citizens-at-large who have no recognizable agendas related to the question at hand. We have to have participants who become well-informed on the issue. We are talking here about informed discussion. We are not, on the other hand, trying to make experts out of everyone, but there does need to be a basic amount of information that people have. If you refer back to Mary Pat MacKinnon’s spectrum work—one of those spectrums that came up this morning—we are trying to do this at that middle level of engagement. [That is,] an interactive level that is beyond what you get at focus groups and polling, but is not necessarily all the way to the end where you are delegating the decision to outsiders. I think having independent and balanced fact-finding is important, and [so is] the presentation-neutral facilitation. And [something that] I think [is] very important [is the] participation of government and commitment of government, so that this is not talk for the sake of talking. This is talk that is designed to inform a pending decision that is going to be made. So, it’s an opportunity to shape a real-life decision. And one way to help to make sure that happens is to have clear linkage to decision makers. The approach we use was really one that required—because we are a pilot project, we are not very well funded—we really had to work together to make this happen. And in fact, I notice that some of the attendees in this meeting [were] actually participants, at least three or four people. But we had at least 15 different organizations participating and contributing different services or goods or expertise to this project and they are all listed here [note: referring to slide image]. There were five phases to the project. Again, [I want] to remind you that we had both stake-holders and public. When I first got into this field early on, someone said, “You are going to come to a fork in the road very early on and one fork says ‘Citizens’ and the other fork says ‘Stake-holders.’ And you are going to have to make a choice.” So I did the Yogi Berra thing and said, “When you come to a fork in the road, take it.” And so, we designed the model that would include both publics, because this is one big question in this field as well, “Who is the public anyway?” But I think most people agree it has these two major arms. So why not include them both? The five phases then included a meeting of stake-holders who would help to frame the issue. Then an entire day devoted to deliberation on the part of citizens. Then a stake-holders meeting for the second time to make up their minds, but now informed by the input directly from the citizens. And then because of numbers’ problems, we could only have limited numbers to add to our credibility, we took this out on the road to the four different parts of the country and actually presented our deliberations—our verdict, if you will—to citizens to ask, “Does this pass the laugh test? Is this something you citizens can live with?” They didn’t deliberate to the same extent as the original two groups, but they did filter the results to make sure that these were compatible with their views as well. And then, finally the feedback that we got from those sessions was incorporated by the stake-holders again into a final report. How many people did we attract to this? Well, the deliberation day in the South—it was done in Atlanta for budgetary reasons, [and] we were able to attract over 100 citizens. This was on a Saturday, with no money. They came at 8:30-9:00 in the morning and spent the entire day going through the different phases of the exercise. In Massachusetts in the feedback session, there we had those numbers and you see the other numbers for the other parts of the country [note: referring to slide images]. As far as the stake-holders, we had a group of approximately 35, and they represented all of the stakeholder interests that we could identify—the health professionals, the federal agencies, industry, the vaccine industry in this case, consumer advocacy groups, state government, and minority groups. What was actually the work of the citizen? What did they actually do?—because I was told the focus of this session should be to give you an idea of how we did this and not the theory. Well, first is the learning part. And here, we were very lucky to have a really outstanding speaker who was able to come in, and in an hour and a half approximately, give Flu 101 basically to these citizens, [and] do it in a way that was very successful in communicating to them, was not condescending, made people feel comfortable about the information they were getting, and was able to allow a question and answer period. In addition to that, we had in advance worked hard to identify what we thought were the most important things that people needed to know about influenza in order to have an informed discussion. And we were able to boil that down to twenty different topics, [and we] provided that information to them in advance. And then we did—to warm them up to the kinds of dilemmas they were about to face—we did an exercise in values dilemmas that had been constructed by an ethicist from Harvard that had been used earlier with the stake-holders which was very effective in getting people to understand the kinds of tough choices they were about to face and also the values that were going to be in conflict. Then, we had small group discussions for five choices: save the most lives, assure the functioning of society, protect the young first, first-come first-serve, or use a lottery. Those were the topics they were asked to choose on and discuss. They—individually after discussion at these tables—were [then] each given three dots on which they could vote for one or more of the five choices. They didn’t have to put all their dots on one but could split it out. And then we had further discussion in the plenary session. The stake-holders, as I said, framed the issue. With that group, instead of giving them only five choices, we actually split out the how you assure the functioning of society and actually gave them more specific societal functions, such as “assure public safety” or “maintain emergency or life saving services,” [or] “protect the key leaders of society”. We had a question about the objective around protecting homeland security and so forth. They then ranked the goals in order of importance, one at a time, starting with the most important by placing dots next to the options. And then we had a large group discussion to analyze and refine the voting results to make additional recommendations… I’m getting harassed by the moderator here so I’m going a little fast. What were the results? Well, the first choice thought to be the most important function was to “assure the functioning of society,” followed by a close second, which was to “reduce individual deaths and hospitalizations.” This is interesting for a number of reasons because the experts were deliberating separately and independently and actually came to a reverse decision. I think it’s fair to say that the experts had ranked number two as the number one and one as number two. But the citizens in ranking number one first, were very cynical and they wanted to make sure that we were able to accomplish that first goal using the minimum number of doses to accomplish the task. They didn’t want every Tom, Dick, and Harry, claiming that he or she was essential to society, but they recognized that that was the number one priority. And the other goals: lottery, first-come first-serve, really scored much lower. In terms of impact, one piece of evidence that we have—as you know the HHS recommendation in November of last year basically went with the expert opinion—but they did have language in the narrative accompanying the expert recommendation, which I think was indication of the fact that we were considered. HHS has recently initiated outreach and engaged the public—a theme that has emerged is the importance of limiting the effects of pandemic on society reserving essential societal functions. Basically, HHS—and my interpretation [of this]—was [that they were] leaving the door open to say, “This is still under discussion,” and encourage more discussion. I’ll skip this [note: referring to slide], but basically let you know we were fortunate to have an independent evaluation simultaneously and it basically has been a very favorable evaluation. The conclusion from our project: we obtained proof of principle at least for the vaccine community. I think this proof perhaps is already there for those who are in the deliberative democracy field. But for the vaccine community, we obtained proof of principle that public engagement is possible and useful to decision makers. I think the evaluation is not over; there are other ripple effects from this. It turns out [that] the HHS guidance [released] last November is not going to be the final say. It’s now being referred to as “interim guidance” or “preliminary,” and we are as a nation committed now in the latest plan to go through this again with the final guidance scheduled for 2007. At the state level there is a possibility we will be working with some states who may want to engage in this also. North Carolina has already undertaken something on its own and CDC has expressed an interest in doing a project where we would get citizen input on the tough choices we make around social distancing. And we plan to do another project on that. And this morning you heard about the plans in Canada. Thank you. [Applause] Proceedings of the May 23, 2006 Summit: Disease, Disaster, & Democracy Transcription by CastingWords | 
