University at Albany Center for Public Health Preparedness
Engaging the Public in Pandemic Flu Planning
Original Satellite Broadcast: 01/11/07
Moderator: Good morning and welcome to the University of Albany center for public health preparedness grand rounds series. I’m Peter Slocum and I’ll be your moderator today. Before we start I’d like to please ask you to fill out your evaluations on-line. Continuing education credits are available and your feedback is always helpful to the development of our future programs. We will be taking your questions later in the program. Please note that this program will be extended by an extra 15 minutes so we’ll have plenty of time for those questions. The toll-free number is 800-452-0662. You may send written questions by fax at any time. That number is 518-426-0696. And also this time you can send questions by e-mail to the address that is on your screen. Today’s program is engaging the public in pandemic flu planning. As public health officials you are all well aware that pandemic flu planning poses many serious challenges. To discuss this topic and bring us up to date on the tools we have in place and the systems we need to develop we have Dr. Roz Lasker with us today. Dr. Lasker is director of the division of public health and the center for the advancement of collaborative strategies in health at the New York Academy of Medicine. Welcome to the program.
Dr. Lasker: Thank you very much. It’s nice to be back.
Moderator: It’s delightful to have you back. The demands of public health, as our audience well knows and you well know, have been expanding enormously in recent years and especially with pandemic flu planning which is the top of lots of people’s agenda. What do you see as the major challenges related to that planning?
Dr. Lasker: There are clearly a lot of challenges for me to stand out. One that’s been clear for the last two years is that, unless we’re very, very lucky for the first six to eight months of influenza pandemic, we’re not going to have any vaccine to deal with the epidemic.
Moderator: It will take that long for–
Dr. Lasker: It’s going to be taking that long to develop an effective vaccine.
Moderator: Right.
Dr. Lasker: So public health is going to be lacking its most effective strategies for dealing with a pandemic and controlling the disease. The second challenge may not be so obvious. Where as public health is responsible for protecting the public; that’s the mission; that’s what’s important. The plans for responding to a pandemic flu have been developed largely without involving the public, and when we don’t have the voice of the public, do we really know what matters to people? Do we know the problems that they would face? Do we even know the roles that they could play in controlling the epidemic? I think that these two challenges are interrelated. And our work has shown that, if you work with the public in new ways, engage them in thinking about pandemic flu in new ways, that you can identify and develop protection strategies that don’t involve vaccines and that are beyond the authority and the resources for public health to carry out on its own, but not beyond the resources of entire communities to do.
Moderator: Okay. Well, what kind of non-vaccine strategies you’re talking about putting into in our tool box here?
Dr. Lasker: The one I’d like to talk about today is a form of social distancing that we call protective home isolation. And this form of social distancing came up in the redefining readiness study that I spoke about on this broadcast two years ago. And in that study, we found that, in a deadly contagious disease outbreak, two-thirds of Americans want to avoid coming in contact with people they don’t know, primarily by isolating themselves with other family members at home. Now, this inclination towards protective home isolation, I want to emphasize is not based on fear or panic. In fact it’s a very rational approach. And think about two types of deadly contagious disease outbreaks; one a smallpox outbreak, which we had actually looked at in the readiness study. And in a smallpox outbreak, isolating yourself at home is the only sure protection strategy for 50 million Americans who are at risk of getting severely ill or even dying if they get the smallpox vaccine or come in contact with someone who was recently vaccinated. If we think about pandemic flu, protective home isolation is a way for people to avoid getting exposed and coming down with the disease before a vaccine is available.
Moderator: Do we have any data about the effectiveness of protective home isolation in this pandemic flu type scenario?
Dr. Lasker: We do, and it’s actually quite striking. The federal government has recognized that we’re unlikely to have a vaccine for the first six to eight months, and so they’ve been funding some very sophisticated mathematical modeling for pandemic flu. And the EpiSimS modeling group at the Los Alamos National Laboratories have shown that protective home isolation can have a big impact on reducing the proportion of people who are infected with flu. If 30% of the population in a city, for example, stay at home, the proportion of people infected is cut by half.
Moderator: Wow.
Dr. Lasker: If 40% stay home, you can cut the proportion of people infected by two-thirds. Now interestingly, they’ve also shown that if people can stay home for months and not leave the house, you can also reduce the duration of the epidemic itself, and you can reduce that duration one third if just 30% of the population can actually stay home. So very impressive findings, and it’s actually– the modeling that they did was based on an assumption that people would not start to stay home until 70 days after the first confirmed case of influenza in their community. If people actually started to stay home earlier, the impact would be much greater.
Moderator: Right. And that’s roughly halfway into that gap before a vaccine is available.
Dr. Lasker: Exactly. So it will be even a bigger impact than this modeling shows.
Moderator: Right. If the modeling is so striking, and it’s what people apparently want to do– it’s their rational instinct is– why aren’t we planning for that more actively?
Dr. Lasker: Good question. I think that there are two reasons that come to mind for me, and one of them has to do with the fact that protective home isolation is very different than the way we usually think about isolation and deadly contagious disease outbreaks and the form we’re most used to is quarantine. In quarantine, people are isolated forcibly. I mean they’re required to be isolated, and the people that we’re isolating are folks who are either sick or have been exposed to the disease, and we’re isolating them to prevent them from transmitting the disease to others. With protective home isolation, it’s a voluntary form of isolation. It’s something that people want to do for themselves when they’re healthy, when they haven’t been exposed to the disease, and they want to do it to prevent themselves from getting sick.
Moderator: Are there other reasons that we’re not going after this as the right way to attack the problem?
Dr. Lasker: I think the other big reason is that it’s not something that’s easy to pull off. In fact it seems pretty daunting. If you want large numbers of the population to be able to stay home for months, and you want to do this in ways that don’t destroy the economy, I think just even thinking about that has made most people dismiss it as an option. And the other reason related to that is that again public health can’t do this on its own.
Moderator: Right.
Dr. Lasker: So the idea of thinking about a strategy where a lot of players would have to be involved to pull it off is also very difficult.
Moderator: That’s right. We’ll get into some of the economic issues, business and workplace and everything. It’s clearly way beyond the authority of the public health people and our audience today and around the country.
Dr. Lasker: And it really has been dismissed if you look at the literature, even though we’re funding modeling about this, there is no planning going on that I’m aware of except what I’m going to talk about today.
Moderator: And you believe, if we can lead into that, that public health can begin to achieve this kind of approach by working with other organizations and people.
Dr. Lasker: Yeah. I think the work that I’ll be discussing from our redefining readiness demonstration suggests that this is a very worthwhile strategy to pursue and that it’s very likely that it can be pulled off in ways that actually sustain the economy, which is key.
Moderator: You’ve done this demonstration site study, which– at different locations around the country. Maybe you should describe that for us.
Dr. Lasker: Right. The first thing just to clarify is that, although the redefining readiness study was a research study. What we’re doing now in the demonstrations and working with communities is actually creating with them a new way to engage community members in thinking about emergency preparedness and participating in identifying problems and figuring out how to address them. And we’re working with four sites around the country. They are both urban and rural, and they include the city of Carlsbad and south Eddy county in New Mexico; the Humboldt Park neighborhood in Chicago, Illinois; the Benjamin Van Clark, Dixon Park, Live Oak and Eastside concerned citizens neighborhoods in Savannah, Georgia , and in rural Southeast Oklahoma, Choctaw, McCurtain and Pushmataha counties. The populations in these communities are very diverse. They include Native American, African-American, Hispanic, Caucasian populations, as well as others.
Moderator: How has the public been involved at those sites in this project?
Dr. Lasker: In very new ways and in different ways in different phases of the process. As I mentioned, the engagement process has been developed by teams of community residents in these sites working together and with a support team that’s been organized by the center. And the engagement process has three phases. In the first phase, which was completed over the summer, people– community residents have been involved in small group discussions about preparedness problems. In the second phase, which is just beginning now, the findings from those small group discussions are being shared with a much broader group of people in the community; and in phase 3, which is going to be starting this spring, community teams are organized to take action on the findings.
Moderator: Okay. Maybe we should talk a little bit about how those discussion groups were run, since we’re going to be talking about the isolation– protective home isolation idea, the thinking that came out of them.
Dr. Lasker: Right. The discussions had two objectives. One was to provide a process that would enable people to tap in to their own common-sense knowledge and to share that with each other in the community. And the other objective was to actually build resilience. One thing that’s striking me, as someone in public health and involved in emergency preparedness, I and others have lots of opportunities to think about these kinds of epidemics or other emergencies in advance and there are top-off exercises and tabletop exercises and all sorts of things, and that helps to build resilience because you’re thinking about it in advance. It’s not a shock when it happens. You know, you’ve planned. But actually the public has almost no opportunity to do this. So we wanted to provide an opportunity for the public to think about it in advance. So if you think about these two objectives sort of being able to tap into your own common sense knowledge, build resilience, besides having developed a process that was very, very different than traditional kinds of focus groups or public deliberations or town hall meetings.
Moderator: How were they different exactly?
Dr. Lasker: Well, people got together for two hours, ten people at a time, and they got together to discuss two very specific and realistic scenarios. One, as I mentioned, was a scenario with a deadly contagious disease outbreak where they thought about protecting themselves by isolating themselves with other family members or household members for months. And the other was a scenario where they would need to take shelter in whatever building they happened to be in at the time, but just stay there for a period of days to– hours to a couple of days. So people were presented with a scenario, and then the ten people in the discussion thought about and identified the problems that they would face trying to protect themselves in this situation, and then based on the problems the group had identified, they talked about actions that they and others in the community could take to address those problems.
Moderator: And I know, as an example, if I can divert for one second, you were talking before about the blackout experience in New York City and people– one woman in your building had to walk all the way home to Brooklyn. It took hours and hours and she might have been much better off just staying in that building where she was during the blackout time.
Dr. Lasker: Right. And, you know, the academy where I work, as most other workplaces, haven’t really thought about what if something happens that people might need to take shelter in a building? What would you really need to do to make it safe and possible for that to happen? Again, unless we think about these things in advance, we can’t prepare to make it possible.
Moderator: That’s why engaging a small group is so important to get people actually thinking about that and chewing on those ideas.
Dr. Lasker: Right. Now each of these discussions only had ten people in it, but actually a very large and representative group of folks were involved overall. These discussions were continued until almost 2,000 people had been involved in more than 200 discussions in these four communities. And a lot of attention was paid to involving people who represented everybody in the population, and when we compared the people who had participated with census data, they very closely matched the census data according to age, although we only involved people 18 and over; gender, race, ethnicity, education, including the least educated, income, including people with very minimal income, folks– by household size and even people who didn’t have telephone service. So we had a very close match where people– all sorts of people from the community could come in and speak for themselves about what they and their family members would face.
Moderator: I’m curious and I think our audience may be interested in this, too, because that’s a difficult problem of getting such a representative sample of the community. How did the sites manage to do that?
Dr. Lasker: With a lot of intention. You’re absolutely right. There are several strategies that the sites used. For one, it was critical to make participation as comfortable and easy as possible for folks from all different groups. So to do that, the discussions were held at the most convenient times and places for people. They were held at community centers, churches; even in people’s homes who hosted it for other people who they knew in the neighborhood. A lot of supports were provided, transportation for folks who needed it, child care, refreshments if the discussions went over a period where people would want a meal, so that was there. We held discussions in Spanish as well as English for people who were Spanish speakers in communities, and the facilitators were selected for the most part to be very much like the participants of that particular group. They received a lot of training to make sure that they valued what people had to say, and again the facilitators themselves were community residents. Another feature of the discussions was that a lot of attention was paid to create conditions that made it possible for people to express what really mattered to them. You know, in a lot of surveys or focus groups, people are asked very directed questions.
Moderator: Right.
Dr. Lasker: And they’ll respond to it. But here it was quite an unconstrained discussion. All that happened were people were put in a realistic situation. And then whatever problems they identified, that was the focus of their discussion. And no value judgments were made about anything that people said. And the last aspect that I think is very important is that we made a lot of effort to be sure that the participants and the community as a whole had a complete and accurate record of what everybody said. You know, very often we’ll have discussions, but then when you look at the notes– I don’t know if you’ve ever looked at minutes after a meeting. Sometimes a lot of the essence of what people were saying is missing or things are reduced to sound bytes or things have been reinterpreted or eliminated. The facilitators received a lot of training to help people articulate what mattered to them as specifically as possible. The recorders wrote that in the own words of the participants on flip charts. Everybody received a complete record at the end. And when an analysis was done, again nothing was edited, reinterpreted, eliminated. So we really were true to what mattered to people.
Moderator: That sounds great. It’s an awfully time-consuming and resource-intensive process, it sounds like.
Dr. Lasker: It is, but it’s also very thrilling. When people got the records of their own discussion right afterwards, there were their words, written; and as we’re now moving into the community conversation, there are their ideas, and I can’t even describe what that does for people.
Moderator: Wow. The resources in this part of a grant, I assume that would be a big amount of money nationally.
Dr. Lasker: It was actually– that isn’t really that much money. The funding for this, the demonstrations, comes from the W.K. Kellogg foundation, and it’s been– actually the amount of money involved is not that great, but it is resource intensive in terms of time and effort of individuals to put into this. Interesting again, the community residents who are leading the teams are just very committed to the process and moving it forward.
Moderator: Getting those community figures, that’s pretty important.
Dr. Lasker: Yeah.
Moderator: One question, when people get the reports back of their conversation, that the– reported anonymously or there are names? Peter and Joan are in the group?
Dr. Lasker: During the discussions, everyone is on a first-name basis only, and when ideas are written on the flip charts and from that point on, no idea is ever associated with anyone’s name.
Moderator: Oh, I see. Okay.
Dr. Lasker: So that all of the ideas are there, but not the name of the person who addressed it.
Moderator: So let’s get to the protective home isolation question. What did these discussion groups reveal about that issue?
Dr. Lasker: Well, clearly there’s a lot of challenges involved in pulling this off, and if you look at the problems that people identified, basically four conditions need to be met for this to happen. You need to know what to do before you expose yourself to a lot of other people. You need to be able to maintain an isolated household. You need to be able to deal with the emotional challenges of household isolation, and you need to be able to stay at home without sacrificing things that you value.
Moderator: Right. And the first step here is knowing what to do before an outbreak and preparing in advance, right?
Dr. Lasker: Right. And also getting information to people when an outbreak occurs in the right way. I mean before an outbreak, right now, for example, you can get information about this in many different ways. You can go out. You can speak to your doctor. You can go to community groups. You can think about this, and actually folks in the communities want to do that now. It’s very important. But once an outbreak occurs, if the objective is for people to be able to isolate themselves at home, then people need to get information in their homes, without going outside, and they need to get information from people that they trust and information that they can understand. And that’s a big problem for people who don’t have telephones, for example, don’t have radio or TV, and many of them participated in our group discussions; difficult for people who speak languages other than English or who don’t trust the government, and there are many people out there who fall into that category, too.
Moderator: What did the discussion reveal about people’s thinking regarding maintaining an isolated household over a period of time?
Dr. Lasker: Well, there are two big points to make here. One is you actually need a place to isolate yourself. And folks in our discussions who were homeless or who lived in institutionalized settings actually don’t have that option. And so those are groups of people we need to think about. But for everybody else, the folks who do have a home, the big issue here is that you need to be able to carry out the activities of daily life and bring in the supplies that you need without exposing yourself to people who could make you sick. And, you know, a few things to note here. We’ve been telling everybody to keep three days of food and water at home, well that’s only going to last you 3 days. Well, unless you’re a self-sufficient rancher or farmer and we had a number of those in the discussion, it’s really not going to be possible to stock up for six months to take care of yourself. So you need to have– you can’t go outside to get it because then you expose yourself to other people, so you need to have folks bring stuff to you. But the big problem is how do you know that the person bringing stuff to you isn’t going to make you sick? You can be infected with influenza and you can be able to transmit it to others without looking sick at all.
Moderator: Right.
Dr. Lasker: So that’s a big trick. And people also cared about the fact that people bringing supplies to you need to be protected so that they won’t get sick and put themselves at risk. And that’s the big challenge of maintaining an isolated household.
Moderator: It’s not just a matter– sort of in medical terminology, it’s like breaking isolation. It’s not just a matter of calling up your favorite restaurant and having them come over with a delivery.
Dr. Lasker: No. Even in New York City where I do that in the evenings, I wouldn’t be able to do that in this situation. So I think it’s an issue that we need to find ways for people to be protected and safe, who can bring supplies to folks who are isolating themselves at home.
Moderator: Now to another category, which came up in the discussions I know. The emotional impact of isolating yourself and/or your family there for a long period of time. What kind of stresses do people face?
Dr. Lasker: A lot, and there are different ones for different people. And I think we need to think about them to make this possible for folks. Many people have a great need for social interactions, more than just the people in their household. Many people have mental health problems and are on medications and staying at home can exacerbate that. Folks who have family members who depend on them who live elsewhere, it’s a big problem. Living in close quarters can strain existing relationships between partners and with children. It can promote anger and violence. People can get bored. People have a need to go outside and be in sunlight and to exercise, and I think for folks– even think about public health people and other health care workers, the idea of staying home and not being able to do your job is a very big emotional stress as well. So those are what we identified.
Moderator: Some of those you’ve talked about here relate to sacrifices involved in staying at home for months. Can you elaborate on how the people felt about those and thought about dealing with those?
Dr. Lasker: Well, there are three big sacrifices or trade-offs. One has to do again with people who are not in your household but depend on you. If you have an elderly parent living else where and they depend on you to take care of them. Who’s going to take care of them? If you have a pet who needs to go outside who’s in your household, who’s going to take the pet outside?
Moderator: Right.
Dr. Lasker: The second trade-off involves education. You can’t go to school if you’re isolating yourself at home, but parents are very concerned that their children will fall behind in their education, and many students in high school and college are as well.
Moderator: Right.
Dr. Lasker: So the idea of having to sacrifice your education for a period of six months is a daunting one for folks.
Moderator: That came up as a very passionate concern.
Dr. Lasker: Very passionate concern. Last, what I think of as being almost the catch-22 of this entire situation. For many people, if you can’t leave the house and you can’t show up for work, you’re going to lose your job. When you lose your job, you lose your income.
Moderator: Right.
Dr. Lasker: When you lose your income, you can no longer afford to pay for the supplies and assistance you need. You won’t be able to pay for your mortgage or your rent, so you may actually even lose your house. You can’t pay for your utilities, which will be turned off. So basically you no longer can protect yourself at home. So this is the big catch-22 of protective home isolation. We need to find ways if we’re going to make it possible for people to do this without losing their jobs and income.
Moderator: Of course in our society, you lose your health insurance if you lose your job. Should you get sick, then you’re in trouble.
Dr. Lasker: That’s right.
Moderator: So the problems that most people face trying to isolate themselves seem overwhelming is maybe not too mild a word– I mean too strong a word. How can they possibly be addressed?
Dr. Lasker: Well, as you say– I mean they are so overwhelming that the whole idea has basically been dismissed. And I think that that’s premature. It’s true that there’s no way that most people can do this on their own– again unless you’re a self-sufficient rancher or farmer. There’s certainly no way that public health agencies can– within their own authority and resources– make this possible. But the ideas that people had about things that they and other people and organizations and communities could do really showed that it is probably possible for communities to pull this off if diverse people and organizations work together, and it’s possible to do this in ways that would actually sustain the economy.
Moderator: So how do we get to that solution?
Dr. Lasker: Well, there were what we call– five keys to the solution here that are concepts that came out of these discussions that I think lead us toward what is involved in making it possible.
Moderator: Let me take one break here, Dr. Lasker, and remind the viewers that we’re going to be taking your calls at the end of the program. The toll-free number is 800-452-0662. You may send written questions by fax at any time to 518-426-0696 and by e-mail to that address that’s on your screen. We’ll be running, again, an extra 15 minutes so we’ll have plenty of time to take those questions. Now if I may come back to you. Sorry for the interruption. Let’s talk about some of these keys that you’ve identified or that the folks in the discussion groups identified.
Dr. Lasker: Well, the first key is that the not everybody has to stay home. If everybody had to stay home, this absolutely would be impossible to pull off. People who can be protected safely with pharmacological agents can help others protect themselves by staying home. And think about it again in two kinds of situations. In the smallpox kind of a scenario, the only people who would really need to protect themselves by staying home are the 50 million people who could get sick from the vaccine or if they come in contact with someone who was recently vaccinated. So a subset of the people who get the vaccine, and in that situation we have plenty of vaccines, so that’s not a problem. A subset of the people who can safely be vaccinated can be providing the supplies to folks who are staying home. Now, in an influenza pandemic, it plays out a little bit differently. What is critical to make this work is that we have effective antiviral agents. Antiviral agents that can actually protect people from getting sick. And in that kind of a situation, even if there’s a limited supply, people– a subset of people who get those antiviral agents can be providing the supplies and assistance that make it possible for the others in the population to stay home. What’s interesting with this is that we learned through the discussions that– although we never posed the problem directly about prioritization of limited supply of drugs or vaccines– that in fact the group solved the problem because, when they were thinking about protection, they basically found a way for everyone to be protected one way or the other. And so that, if we make sure that a subset of people who are getting antiviral agents or limited supply of vaccine are making it possible for other people to protect themselves at home, we actually have a very equitable system.
Moderator: And the people in the discussion came to that sense themselves?
Dr. Lasker: Yes.
Moderator: Protect people who can function outside and keep the others at home.
Dr. Lasker: That’s right.
Moderator: I see. The second key?
Dr. Lasker: The second key is that people who are isolating themselves at home can still play a very valuable role in society. There’s a lot that people want to do and can do from home. Some can continue to do their jobs from home. I certainly could do a lot of what I do from home if I had the communication systems. Other people could continue to work in their jobs if it’s modified a little bit. So if you’re let’s say a health care practitioner, you can provide counseling over the phone or by e-mail to patients. If you’re a school teacher, instead of going to classes, you can do education online, for example, or again by telephone. And some people can actually take on new job responsibilities that they didn’t do before that can help respond to the epidemic itself. So they can take hot line calls; they can be involved from home on phone organizing the delivery of supplies and assistance that other people would carry out. They can check in to see how people are doing. They can do cheer-up calls to help people deal with emotional stress. So there’s a lot that people actually can do from home. And I think one of the important aspects of this key is that, by making it possible for people to work from home, you not only help them deal with the boredom and emotional stress and everything else. You help to protect their income, the economic viability of their household, and you also help to promote business continuity, which is a very key challenge in a pandemic flu, no matter how it plays out.
Moderator: Right. You mentioned home communications in your case and many other cases. Is this essential for people who are going to be isolated at home?
Dr. Lasker: Oh, absolutely. And I think it’s really the advances in technology in a sense over the last 50 years or so that make protective home isolation possible in a country like the United States. We– to make this work, as many households as possible in the country need a working telephone, a radio or TV and internet access, and they need it for multiple reasons. They need it to be able to receive information in their home, as we talked about before, to communicate with people outside; to request assistance; to continue their work, continue their education; to have access to entertainment; to deal with the emotional stress and activities that they can do; and also to be able to carry out certain household activities, like banking and things like that, online.
Moderator: Right. As you say, many of those things are technologically possible.
Dr. Lasker: Absolutely.
Moderator: Feasible for many but those resources haven’t been extended to every home in the country.
Dr. Lasker: Right. But that is something that’s really key.
Moderator: Right. In past emergencies, we’ve all seen how communities come together in ways that a lot of people in government and the media remark on as remarkable; but in fact I know your experience found that we shouldn’t really think of it as remarkable; that people are very inclined to come together as a community to try to work on an emergency.
Dr. Lasker: Right. And I think it’s fascinating that in every one of the sites, repeatedly in the discussions people talked about what groups of trusted neighbors could do for each other. But also that a lot of preparations need to be made in advance for this to be possible. They call these groups and we’re calling them sort of local networks for– of people and organizations, for lack of a better term. And if they’re organized in advance, they can help not only the residents in the neighborhood, but also it would be a big boon to folks in public health and other forms of emergency management. Their participants in the groups talked about some of the roles that these networks could play. For example, serving as a trusted point of contact between people in the neighborhood and others to find out about the emergency or what’s going on. These networks can know and keep track of people in the neighborhood and who would need to protect themselves by isolating themselves at home, who have dependents that live elsewhere. They can establish local call-in centers, either phone call-in or internet call-in where people can get information in a language that they understand, for example. They can identify and train residents to provide assistance and supplies to isolated households, and they can also work to organize the delivery of supplies and assistance and connect their network with many other larger organizations, both locally, state level, even nationally to provide assistance. So they’re really a link– I would think about myself and public health, a link between a public health agency and the residents of different neighborhoods in the community.
Moderator: As they envision it, these are loosely organized, not charted or anything.
Dr. Lasker: Right. Loosely organized, but with enough organization to be able to take action. And what’s interesting is that the participants in the discussions see these networks as being able to help in a whole array of situations, not just pandemic flu. So– and many of them are being established informally already. If for example I’m coming home and there’s nobody there to pick up my child from school, then the network knows that I have a child coming home from school and I can put a call in and somebody will go and pick up the child. So these are very important kinds of connections.
Moderator: Right.
Dr. Lasker: It’s really a form of building community.
Moderator: Right. That’s what it sounds like. I should let you talk about key number 5 here for making successful protective home isolation possible.
Dr. Lasker: Well, key number 5 is recognizing that people who are isolating themselves during a deadly contagious disease outbreak, like pandemic flu, are not only protecting themselves; they’re also contributing to the public good. And that’s because they are limiting the social interactions that are so important for sustaining the epidemic, and that’s of course why the modeling shows the big impact on reducing the proportion of people who are infected and even the duration of the epidemic. And because they’re protecting others as well as themselves, people in isolated households deserve all of the protections that society owes to people under forced quarantine. And those protections include supplies, services, care to meet their basic and medical need; job protection and cash assistance to compensate for loss of earnings. Very important protections that are granted to people under forced quarantine, but right now don’t exist for people in voluntary protective home isolation.
Moderator: Right. That is a shift in thinking but as you point out those protections or assistance are already there under our standards for people in quarantine. These people are accomplishing the same thing in a voluntary way by protecting themselves at home, and so they should have the same benefits, so to speak.
Dr. Lasker: Right.
Moderator: Okay. To make protective home isolation work, what would different people and organizations actually have to do?
Dr. Lasker: The discussions as I said, after people identified problems, they identified a broad array of actions that they and others in the community could take; and that– the findings of the discussions will be available in February, and so I’ll give people contact information to get that.
Moderator: Okay, good.
Dr. Lasker: And these findings are going to be the starting point for the community conversations that the sites are going to be getting involved with. I don’t have time obviously to go into all of the actions, but it might be valuable to just at least go over some of the particular roles that public health would have.
Moderator: Yes, indeed. Okay.
Dr. Lasker: In contributing to this.
Moderator: That’s great. I think we have a slide that lists some of those that you’ve been able to identify as particular public health issues.
Dr. Lasker: Right. Let me just briefly go over what they are and then I can give you a little more information about each. I think what’s interesting is that most of the effort to make this possible has– is to be done by other people and organizations in the community. But there are six things that public health has the expertise and authority to do, and they’re really critical to make all of this work. One has to do with the stockpiling and prioritization of antiviral drugs and vaccines. Second has to do with oversight systems. A third deals with the public health work force itself. Fourth, the relationships with local networks. Fifth, provision of medical support for isolated households, and the last is the extension of quarantine protection.
Moderator: Okay. In details, the stockpiling of antivirals?
Dr. Lasker: Right. There are really two aspects to this. One is for public health to begin to promote the stockpiling of adequate supplies of antiviral drugs when we’re talking about pandemic flu. From what I understand, the supplies that we have right now are not adequate for doing what we’re talking about. The second is to change the way we’re thinking about the prioritization of antivirals or vaccines when they’re initially available in limited supply. Right now, from what I understand, we’re making antivirals available or we’re thinking about making them available to people who are very ill as a treatment mechanism and to health care workers as a form of protection. There are three other groups of people that we need to prioritize to receive protective antivirals however. Obviously one group are the people who can take these medications safely who will be providing face-to-face assistance to isolated households as I mentioned before. So these people have to be identified and prioritized because otherwise there’s no way for folks in isolated households to get the supplies they need.
Moderator: Right. Those people are going to be the contacts.
Dr. Lasker: That’s right. So they need to be protected and safe.
Moderator: Okay.
Dr. Lasker: The second, obviously are people who are providing other essential services in the community. The last thing you want is for all the utilities to go down because then it’s also not possible.
Moderator: Right.
Dr. Lasker: And the third group, are people who need to go outside to work. There’s no way that they can continue to work from home, in order to maintain the economic viability of their household. So those are the third group of people that need to be prioritized.
Moderator: Okay.
Dr. Lasker: And public health can go a long way towards making that possible.
Moderator: Obviously in concert with other organizations and institutions, but the utility companies, for instance.
Dr. Lasker: Right. And I think it’s a matter of really designating each of these groups as new forms of the central community workers. That would receive prioritization.
Moderator: You mentioned development of oversight as another critical role for public health supplies.
Dr. Lasker: Right. That may not be the best term here, but what I mean is developing two kinds of systems that people talked about in the discussions. One is a system to document that people providing face-to-face assistance to isolated households are protected and safe. In other words, that they’re really taking antiviral medications that will protect them from getting sick and will prevent them from transmitting influenza to other people. In the case of a smallpox kind of situation, it would be to assure that these are people who have been vaccinated and their vaccination site has either completely healed or it’s securely covered so they can’t make anyone sick. The second kind of system that needs to be developed is one that would actually verify the need for certain groups of people to isolate themselves at home. So this is to make sure that, you know, your employer doesn’t feel you’re just goofing off, or as we’ve heard from some people your parole officer doesn’t feel that you’re goofing off. So again, in a smallpox kind of situation, it would be that you really had one of the conditions that put you at risk from the vaccine; and in the case of pandemic flu, it would be that you’re not prioritized to get antiviral agent and there’s really no other way to protect yourself.
Moderator: Right. I see.
Dr. Lasker: So these two systems are very important and people in these communities look to public health for that kind of support.
Moderator: They believe public health has the wisdom and the experience base to make those judgments.
Dr. Lasker: Right. I think it’s important that public health obviously work with communities in doing this, but they really do look to public health for this.
Moderator: Speaking of that, what about the public health work force itself? How do we deal with their needs and issues?
Dr. Lasker: Well, the one thing for public health to think about– I’m sure folks have been doing it somewhat already– are that people who work in health departments are human beings, too, and they’re going to face the same kinds of problems as everybody else. So one of the things that’s important to do some thinking about in advance is ways that public health professionals can continue to do the work of public health from home, so that if not every member of the public health work force is prioritized to receive pharmacological protection, what can they do from home? And begin to think about other kinds of people in the community that can also contribute to achieving the goals of public health in this kind of an outbreak and thinking how they can support the work of public health. The next step of course is to make sure that– take steps to make sure that these people have the technology and training to actually do this stuff from home. So it may be making sure that folks have the capacity to receive 800 calls, hot line calls, directly in their home so they can deal with it in that way or many other things. So beginning to think about the home communications technology.
Moderator: Okay. Another role– and this is a fascinating area that’s kind of new– and that’s the communications and networking with local networks.
Dr. Lasker: Right. The natural inclination is always to think if anything’s going to happen locally, we have to just go out and do it. Here is thinking about really an intermediary body, which is a local network, and the local network would be the folks who are dealing one-on-one with residents in the community and people in isolated households. And health departments can start thinking about now, as these networks get developed, is how they would relate to the networks. When I think about this, I think that the networks can be an enormous boon to health departments, not only in this kind of an epidemic but in other situations, too. It’s a way to communicate with diverse population groups. They’re going to be hearing things from people they trust in language that they understand, and so that can be very helpful. It’s a way to make sure that those it in isolated households really do have the supplies and assistance that they need. Health departments can hook up the networks to other organizations. I think if you begin to think about the other core functions of public health, it’s a wonderful opportunity to be able to work with residents to understand and figure out ways to address other complex public health problems down the line. But I think establishing these relationships and connections is really key. As the networks get established in our demonstration sites, we certainly hope the health departments there will get very actively involved.
Moderator: And obviously this is something you see as happening in advance, the development of the networks and their relationship to link with community public health, local public health agencies to those networks in order to be effective in this kind of scenario needs to happen in advance.
Dr. Lasker: Yeah. You know, someone once said: "relationships are primary. Everything else is secondary." I think that when we’re in a crisis situation, we work much better when we have already developed trusting relationships with other folks, and we can build on that. And so I think, for that reason alone, it’s important, and I think also where all of the links and connections need to be, need to be thought out in advance as well.
Moderator: What about the role of public health agencies in providing medical assistance to communities and households in protective isolation?
Dr. Lasker: Well, here I’m talking mostly about medical assistance in a flu pandemic that has nothing to do with flu itself.
Moderator: Right.
Dr. Lasker: So I think what’s so striking in the work we’ve done is the extent of chronic disease in this country, how many people, including children, are on medications, multiple medications, need continuing medical treatment.
Moderator: Right.
Dr. Lasker: And of course there’s also the emotional overlay involved with home isolation. So I think that public health can play a very important role by organizing in advance to provide physical and mental health type assistance by phone, online and when needed in person, to isolated households. And also people talk about the development of programming to help deal with some of the emotional challenges of isolation, which could be made available on television or like that. I think people really look to public health for that kind of assistance. The fear is that everything will be focused on just people who have influenza, and yet the burden of disease that exists otherwise is enormous.
Moderator: Right. The numbers of people on heart disease medication, chronic disease, cancer patients. In New York State you’d get easily over 100,000 births in a period like this.
Dr. Lasker: That’s right.
Moderator: That you’d have to deal with as well.
Dr. Lasker: Absolutely.
Moderator: The final role you mentioned earlier was to extend the quarantine benefits, so to speak, to conceive of these folks as being in the same category as quarantined people in terms of the rights or benefits they should get from society.
Dr. Lasker: Right. I think this is very important public health can play a lead role here, and there are a lot of examples actually. It varies of course in different states. New Mexico for example has legal job protection for people under quarantine. During the SARS epidemic in many countries, cash awards were made to compensate people for lost earnings. There are protections in the model state emergency health powers act that we can look to as well. But I’d like to emphasize that the quarantine protections are not the only ways to protect people’s jobs and incomes and services and possessions. We have some wonderful legal consultants working with the demonstrations. Anne Hunter is one. We’re looking at the authority of the federal emergency declaration, what can be done through that; extending unemployment benefits to people who actually have a job but can’t go to work; using a jury system model to make sure that people actually get compensation for doing something that’s in the public interest; expanding the use of employment benefits like disability and sick leave. So I think that there’s a lot of mechanisms that we can explore to do this. I’m also aware that public health is moving actually away from forced quarantine for a variety of reasons, one of which may be the costs involved, and the protections that people get under quarantine. And we’re here talking about expanding it. But I think these are very important things to consider, and we’re actually going to be moving to do some economic analysis about this.
Moderator: Good. Okay.
Dr. Lasker: As well.
Moderator: What do you see as the next step for public health in addressing this kind of scenario here?
Dr. Lasker: Well, public health professionals have been involved in this work. Drew Harris from the centre for emergency preparedness in New Jersey has been on our support team and he’s been very helpful. And public health professionals have been involved in some of the small group discussions in some of the demonstration sites, which is why we know about the trade-offs that they face trying to stay home when they have job responsibilities. All of the sites are now preparing to brief state and local health departments about the work and invite them to participate in the community conversations and the action teams. And I really encourage any folks from the state and local health departments with jurisdiction over the neighborhoods in the demonstrations to get actively involved in this. I don’t think you have anything to lose by doing that. When I look at the other options for protecting people during a period when we won’t have a vaccine, there really aren’t very many out there. So the fact that there may be a protective strategy that can be pulled off to simply explore that with folks in these demonstration sites would be very helpful. I think people in public health need to know that nobody perceives the onus for carrying this off on public health alone. So it’s not that public health needs to come in and do more than it’s possible for them to do. The other reason again involved is that as we said before, it’s an opportunity to get to know other people and organizations in your own community and develop relationships that can help you not only in an epidemic but in carrying out core functions. For people in public health who are not in these demonstration areas, I really encourage you to review the findings when they’re made available and to start a national discussion about non-vaccine strategies that can be used to protect people, especially protective home isolation. Some of the most difficult aspects for public health in doing this may just be being open to the idea itself, but also being involved in a community process that is being run by other folks in the community. But I welcome and encourage you to be involved. I think your participation would be very much appreciated, and I think it would be an enjoyable one.
Moderator: And essential, if what–
Dr. Lasker: Very essential, absolutely.
Moderator: Is there a way for viewers to reach you and find out more about this project? I think we have a web site address.
Dr. Lasker: Yes. There is a web site and we’ll be posting in February findings. The redefining readiness report is there from the study and some information about the demonstration. A lot more will be available next month and I encourage anybody with questions or comments to get in touch with me by e-mail.
Moderator: Okay. There are some other web sites and references that you wanted to let people take a look at here, too, right?
Dr. Lasker: Well, our center web site is there and you can find out more about the kind of work that we’re doing, and there’s– something just to look at as a comparison really, I know that there was an involvement of community members in thinking about prioritization of vaccine in pandemic flu. The process that was undertaken was actually quite different than the one that we did and I think it’s worthwhile to really look at different kinds of processes and what they came out with and to get an idea of the variation in approaches to community engagement.
Moderator: Okay. I could see that. We’re ready to take questions from the audience now. We do have a number already and I’ll get to them but I want to remind viewers that you can call in. The number is 800-452-0662 and our fax number is 518-426-0696. And the e-mail address is there on the screen. Let me turn to the fax machine. It’s been busy here I believe already. One question here: “Your study is based on a scenario involving people who are not directly threatened by an event. Do you think the public will respond differently during an actual crisis?” In other words, the discussion groups weren’t in the midst of a crisis. "and did the hurricane Katrina experience have an effect on your thinking or the thinking of these people in the discussion groups?"
Dr. Lasker: Good question. Let me start by saying that the demonstrations did not explore what people would do in emergency situations. We did explore that in the redefining readiness study that we did before. And so the question about scenarios is an important one. In response to that from the study, I can say that what people said they would do in the smallpox situation was exactly what health professionals did when they were asked to get smallpox vaccination. Less than 8% of the health care work force actually went and agreed to be vaccinated, and so the reluctance --
Moderator: 8%.
Dr. Lasker: Yes. So the reluctance of the American people to be vaccinated consistent with that. Based on that concordance, I would say it’s likely that what we found would be accurate. The relationship with hurricane Katrina is a very important thing to bring up. You know, the redefining readiness study, all told, identified what I think is a fundamental flaw in emergency preparedness across the board. It’s not just public health. It’s across the board. Emergency experts are deciding what they want the public to do, but because they’re not working directly with the public, they are not finding out in advance whether what they’re telling people to do is feasible for people to actually carry out or is even the safest thing for people to do. And hurricane Katrina proved that that is a really serious problem with dire consequences, because in New Orleans, if you just think about it, everyone was told to evacuate. It was a mandatory evacuation, but many people could not do that on their own. They didn’t have cars. They didn’t have money for gas. They had no place to go, or they had family members who were disabled or who couldn’t leave or in that situation and they weren’t going to leave them alone.
Moderator: Right.
Dr. Lasker: Or they had pets who couldn’t they couldn’t bring with them and they weren’t going to leave them alone or they had just bought a house and they were worried it was going to be looted and vandalized if they left it. So I think the importance of actually looking at the problems people would face trying to protect themselves and what can be done about it is key. That’s actually what the demonstrations are all about. So we looked at two ways of protecting yourself; one by staying home for months in a deadly contagious disease outbreak; the other staying in whatever building you happen to be in for just hours to days, in for example a toxic explosion or something like that. We looked at the problems people would face and what could be done about it. So this was not, quote, their behavior, what they would do.
Moderator: Okay. Here’s a question from Maryland: Did the EpiSimS modeling assume that staying home meant that persons remained at home always, all the time, not going out to the grocery store or anything? Also did they assume that all members of the family stayed home, so that one person didn’t go out to work or school?
Dr. Lasker: The modeling– this is very sophisticated modeling that they used where they actually modeled every single person in the city and their interactions and what they were doing. The modeling assumed that people would stay home, although for different lengths of time. And as I mentioned earlier, the effect on the duration of the epidemic is only there if people can actually stay home for months. But in both situations, for however long you’re staying home, you are actually at home. I don’t know the answer to the second part, but I can find out, of whether they assumed that everybody in your household would actually stay home with you. I can’t answer that so I don’t know.
Moderator: Whether it’s a group or one by one.
Dr. Lasker: Right. Certainly we made an assumption– what we were exploring in the demonstrations was having everybody stay home, because clearly if somebody in the household goes out, gets infected and comes back, it sort of makes it moot.
Moderator: Exactly, right. What solutions did the demonstration sites discussions come up with for a situation involving let’s say manual laborers who are low-wage workers who work hourly and don’t go to work, they don’t get paid?
Dr. Lasker: I think that these are the kinds of people that one of two things needs to happen. Either these, if they are– if their job is critical to the economic viability of the household, we need to think about making them essential community workers and prioritizing them for limited supply pharmacologic protection. And the other is to provide a job– an income protection for these people. And these are separate. So one is assuring that people actually have a job to go back to, that they’re not fired.
Moderator: Right.
Dr. Lasker: And the other is making sure that people get sufficient income to survive during this period, which can be either through paid leave, which is probably not going to be possible for small employers, but it might be possible for some larger employers; and also through the kind of protections and governmental protections that I mentioned before.
Moderator: Okay. In a related question here from Minnesota: Did the groups get to the point of identifying or have you subsequently worked on identifying the types of workers or industries where people can stay home and work from home in a rigorous way? I know you suggested examples.
Dr. Lasker: No. I think that’s actually something that is an action step that is going to be going on in the communities, and it takes some creative thinking, because we need to move beyond thinking about people carrying out their job exactly the way it is right now, to even thinking about modified job descriptions or new kinds of employment that people can take on from home to support other isolated households or to help the community contribute to responding to the epidemic. But again this is something we need to think about in advance. If we wait until an epidemic occurs, we have a big problem.
Moderator: Right. Here’s another one: How would you anticipate dealing with people who refuse to isolate themselves if they were in a category as a result of the community process or whatever process and they declined to isolate themselves? Would the community make rules or have penalties?
Dr. Lasker: Oh, no. This is completely voluntary. So this is not at all about forcing anybody to do anything. And again I just want to go back to– it was such a striking finding. I mean, in a readiness study, two-thirds of the American people want to– in a deadly contagious disease outbreak, want to avoid coming in contact with people who can make them sick outside their home. So I think it’s a natural predisposition that many people have, if they can possibly pull it off. So this is not about forcing anybody to do that. And I think that the important thing here is that, to achieve some of the striking EpiSimS modeling results, you don’t have to– everybody doesn’t have to be isolating themselves. Remember with 40%, you get two-thirds decreased proportion of infected people by two-thirds.
Moderator: It’s not an all-or-nothing: If you don’t get 100% compliance it doesn’t work.
Dr. Lasker: This is really about enabling people to do something they want to do, and that’s not only in their own best interests but in the best interests of others. It’s not about forcing people to do anything.
Moderator: Okay. Process question a little bit: When you’re gathering a community group together in these four demonstration sites, did you seek to include a trusted community leader, so to speak, a reverend or somebody, public health person? Or did you work basically with whoever showed up as a result of the outreach?
Dr. Lasker: Are you– I’m not sure what the question is referring to. The discussions or the teams?
Moderator: The discussions. The groups of ten. Did you try to get in that group a recognized leader or someone who had focused on some kind of leadership in the community?
Dr. Lasker: Good question. First of all, let me just clarify also with the "you." I didn’t do any of this directly here, so these are– this entire process is being run by groups of community residents for other community residents. The teams in each site include people who are– have a lot of connections with other people in the community, and very often in organizing a small group discussion, they worked through someone who had close connections with other folks. It may have been somebody who knew everybody on their block and invited folks to a discussion in their home. It could be somebody who– very often somebody who’s a minister at a church and they organized discussions with members of the congregation. It could be people from a community-based organization, a community center, a library. So they did always work through someone who was known and trusted to the people who would be invited. And that person did the inviting, so that the team in each site didn’t have to know the names or contact information of the people who would be involved unless the folks later wanted to give it to them.
Moderator: I see. So the outreach was a word of mouth rather than radio advertisements or newspaper–
Dr. Lasker: Yeah. Mostly it was word of mouth and person to person. And of course as the discussions started going on and continued, people heard about it and started wanting to participate.
Moderator: Right.
Dr. Lasker: Contacted the team directly.
Moderator: From a public health student: How can we make the public aware of the tasks or challenges, steps in home isolation without alarming them and creating a sense of panic? Or will you argue that this fear of panic is overblown on the part of public health officials?
Dr. Lasker: Well, let me– there was not– there were almost no people who became fearful in these discussions, as there is almost no one who became fearful in the redefining readiness when we used scenarios both in group discussions that we had, as well as in the survey. So I think the first thing to appreciate is that thinking about emergency situations in advance is not frightening for people. In fact it is very energizing for people. It’s an opportunity to begin to think about what you face for the very first time. It’s a prerequisite for building resilience. And so the idea that we want to keep this from people because it would make them upset, actually you’re much more upset if an emergency comes and you’ve never had an opportunity to think about it before and in the midst of a crisis, you’ve got to figure out what to do without any opportunity for advanced preparations. That’s what makes people really upset.
Moderator: Right. Okay. Here’s one for our audience maybe: How can planners, with years of experience and expertise and multiple degrees and seminars behind them, having been used to making decisions in their offices, begin to accept the more open and transparent fluid decision-making process involving these local networks?
Dr. Lasker: That’s a great question. I think there are several keys to moving in that direction. One has to do with thinking about the situation that experts are put in right now, which I don’t think we should tolerate actually. We’re being expected to be mind readers. We’re being expected to know what actually matters to people and what people would face in emergencies. But how can we possibly do that? I mean it’s impossible. So one thing is to be open to a process that actually gives you information that you couldn’t possibly have otherwise. One of the emergency planners in one of our communities, when the findings were finally brought together, said, with a big sigh of relief: Thank god help is on the way. These are things that he just didn’t know about that really, really mattered. The other– I think is beginning to think about how do we define success for ourselves in our own work? Is success that we tell people what they should do and we have the authority to do that, whether or not they ever do it? Or is success actually being able to develop and implement strategies that will actually protect as many people as possible? And if we’re thinking about the latter, that’s something that people in public health, as in any other discipline, need to realize that you can’t do entirely by yourself. One person said to me, talking about this work, that there are many ways for people to be smart. And I think we need to value our own academic and technical expertise. The community certainly values it. But we also need to value the experiential and common sense knowledge that regular people have. I think that it’s why we’ve been so successful up ’til now as a species, learning from our own experience and how to deal with things. And it’s something that we need to provide people with opportunities to use those skills.
Moderator: All right. I think that’s a great way to end it. I’m afraid we don’t have time for all the questions that we’ve got. We have a stack more but we’re out of time. Dr. Lasker, thank you very much for coming and sharing this insight with us. I’m sure many people will get an awful lot out of it.
Dr. Lasker: Pleasure. Thanks.
Moderator: Thank you audience for joining us today. I’d like to remind you to please fill out those evaluation forms on line, continuing education credits are available, and your feedback is always helpful in developing future programs. This program will be available by webstreaming within a week. Please see our web site for more details. We hope you’ll join us for a special broadcast on January 25th on Expanding Health Care Preparedness with Ms. Bonnie Kaido, Director of Emergency Preparedness at Bassett Healthcare. I’m Peter Slocum. See you next time on the University at Albany Centre for Public Health Preparedness Grand Rounds Series.