ASTHO/CDC Draft Interim Report

by: SusanC

Fri Dec 01, 2006 at 20:42:51 PM EST

The Public Engagement Project

On

Community Control Measures

 For Pandemic Influenza

Findings From Citizen Deliberation Days in Atlanta GA, Lincoln NE, Seattle WA, Syracuse NY

Participating organizations:

• Association of State and Territorial Health Officials (ASTHO)
• New Jersey Department of Health & Senior Services
• Center for Biopreparedness Education-Omaha
• Centers for Disease Control & Prevention (CDC)
• F.O.C.U.S. (Forging Our Community’s United Strength) Greater Syracuse
• GeorgiaDepartment of Human Resources–Division of Public Health
• Infectious Disease Society of America
• National Association of County &City Health Officials (NACCHO)
• Nebraska Health &Human Services System
• New York State Department of Health
• Public Health–Seattle & King County
• Searcy, Weems-Scott & Cleare
• Keystone Center
• United Parcel Service (UPS)
• U.S. Department of Education
• U.S. Department of Health & Human Services

Background:

The difficult decisions about the nature and timing of community control measures after the appearance of pandemic influenza led the Coordinating Center for Infectious Diseases at the Centers for Disease Control and Prevention (CDC) to sign a cooperative agreement in 2006 with the Association of State and Territorial Health Officials (ASTHO) to engage the citizen and stakeholder publics. The main goals of the project, entitled the “Public Engagement Project on Community Control Measures for Pandemic Influenza”, were to learn what level of support the public might have and what tradeoffs they might be willing to make for a package of control measures that would be socially disruptive but have the potential to slow the spread of disease. The Public Engagement Project ultimately enlisted the collaboration of 11 other organizations, and ASTHO contracted with the Keystone Center in the fall of 2006 to assist with implementation of the project.

The design of the project was modeled after the Public Engagement Pilot Project on Pandemic Influenza (PEPPPI) conducted in 2005 on the question of who should be vaccinated first in the early days on an influenza pandemic when vaccine supplies are still limited. This model seeks to recruit approximately 100 citizens-at-large from the four major regions of the United States and a separate panel of representatives from organizations most affected by the policy decisions (stakeholders). The citizens-at-large produce their perspective on the question of interest and the panel of stakeholders meets at the end of the citizen deliberations to integrate the findings from these deliberations and to produce a final report reflecting the best thinking of both groups and the “societal perspective” on the question of interest.

This document is an interim report on the findings from the first part of the Public Engagement Project involving the citizens-at-large deliberations. The final report will be prepared after the meeting of the stakeholder representatives.

Methods for Citizen Deliberations

In each city, citizens heard presentations from subject matter experts from CDC or from the local health departments about the essential information they needed to have an informed discussion about community control measures for influenza. Multiple experts were on hand and answered numerous questions from the audience both immediately after the presentations and throughout the day during the deliberations.

To frame their deliberations, citizens were given a hypothetical scenario describing how an influenza pandemic might unfold in the US, including assumptions about the severity of the pandemic, the efficacy of control measures, and possible negative consequences caused by the control measures.

The citizens accomplished five tasks—1) learned the facts essential to have an informed discussion about pandemic influenza and proposed community control measures 2) discussed the pros and cons of five proposed control measures, 3) decided if they supported implementation of these measures, and if so, when, 4) identified the most important concerns surrounding implementation, and 5) proposed actions that could assure successful implementation.

To accomplish these deliberative tasks, citizens participated in small group facilitated discussions of about 10 persons each and in two large group sessions with all participants to review the challenges and to discuss possible solutions. Voting on the control measures was carried out by electronic devices which produced instantaneous results for the participants and organizers.

Results:

A. Numbers and Demographics

A total of approximately 261 citizens-at-large from diverse age, sex, and ethnic groups from the four parts of the United States met in Atlanta GA, Lincoln NE, Seattle WA, and Syracuse NY for four full deliberation-days on Saturdays this fall (October 28, 2006, November 4, 2006, and November 18, 2006). While exact statistics about the make up of the participants are not yet available, an early review indicated good representation from young persons as well as middle aged and senior persons, a reasonably balanced percentage of men and women, significant involvement of African and Asian American members of minority populations, and good representation of adults with school age children. A full evaluation of the project by the independent University of Nebraska Public Policy Center is underway and will be included in the final report in early December.

B. Level of Support For Control Measures

Participants considered two control measures to be the least challenging (Table 1). Thus, all or nearly all of the participants indicated they supported implementation of control measures to keep sick persons at home and to make changes in work patterns and schedules. Support for cancelling large public gatherings was also very high in three of the four cities (99-100%) but was only 79% in Seattle. The reasons for the lower level of support in Seattle are unknown.

Two control measures were deemed the most challenging. In three of the four locations, approximately one out of five participants did not support encouraging the non-ill household contacts of sick persons to stay at home, and an equal percentage did not support school closings. In contrast, support for these two measures was very high in Nebraska (92-100%). The reasons for the higher level of support, not only for these two measures but for all five measures in Nebraska, are unknown. However, one of the meeting organizers noted that “the eastern Nebraska area is fairly well educated and educable on this issue because they are in the bull’s eye of tornadoes every summer and know how to prepare. They are also the friendliest people you’ll meet anywhere, and they truly work together in communities. Personal responsibility is strongly valued, but community support is a given.”

Implementation of all five control measures in combination was supported by two-thirds of the participants in Atlanta and Syracuse, and by 96% in Nebraska. However, only 30% of participants in Seattle supported all five measures. (see discussion in next section).

C. Timing of Implementation of Control Measures

Because the assumption in the scenario was one in which the disease was still outside the US, a separate question was added in three of the four cities after the first meeting to ascertain more carefully exactly when citizens might support implementation of the control measures (Table 2). The citizens were asked if they supported implementation at the following times:

1) at no time

2) when the disease is still outside the US

3) when the disease first strikes the US

4) when the disease first strikes your state (only Syracuse and Lincoln)

5) when the disease first strikes your region or area of the state (only Syracuse)

6) when the disease first strikes your community

7) when many persons are sick in your community.

The highest percentage of citizens in both Seattle and Lincoln supported implementation of the control measures when the disease first strikes the US. This is perhaps earlier than experts might have expected in labeling the control measures as “community” control measures since it suggests citizens could support national control measures. Citizens in Syracuse answered “when the disease first strikes their state”, however these citizens also appeared more willing to support implementation when the disease first strikes the US after they were reminded in response to questions that infected persons can be contagious before they are symptomatic and that disease can spread rapidly with air travel.

Thus, from all three cities where the question about the timing of implementation was asked very explicitly, citizens supported early implementation of control measures even before the disease affects their particular community. As stated by a Syracuse participant, citizens expect the health authorities to tell them when to actually “pull the trigger” on implementation with the understanding that it includes all five measures at once. However, what the citizens made clear is their support for implementation early enough to prevent disease. As the same citizen expressed it, “it is better to act early (err on the side of caution) than to wait too long and have the disease already well established in the community.”

D. Emergent Themes on Challenges and Possible Solutions

The following themes on challenges/concerns and possible solutions were identified during the public dialogues. The themes which emerged can be interpreted as the most important challenges to implementation and solutions were grouped accordingly in the same categories. The themes were developed by grouping similar comments found in the notes of discussion facilitators, report outs, and large group plenary sessions. This report presents the challenges and solutions in general terms rather than linking specific concerns to specific control measures since the measures are being proposed as a package.

The four most important challenges to emerge as themes are:

1) the soundness of the planning,

2) the economic impacts on the population,

3) the information needs of the population, and

4) the social stresses that will be created.

1. Soundness of the Planning

Planning appears to be the largest area of concern for participants.

Many participants agree that in order for control measures to succeed, there would have to be a detailed, consistent, and comprehensive program that addressed all levels of society.  They identified a few specific points that they believe must be addressed in the plan.

First, specific details of the control measures need to be determined. Participants questioned who would be the decision makers, what the timeframe for implementation would be and if the measures would have any “teeth” such as enforcement or repercussions in the case of noncompliance. They also questioned how the time frame for isolation at home would be determined since an individual may be sick prior to experiencing symptoms and multiple members in a household may extend the 7 day period.

Second, government, organizations, communities, businesses and individuals are not prepared to launch a coordinated effort. “Turf wars” and standard practices make the “significant logistics and details” of coordination problematic. For example, arms of the government do not work together, and the American people have an individualistic “tough it out” mentality. Such “lack of coordination” would delay the “ability to mobilize certain efforts of organizations or agencies (e.g. local defense forces, medical corps) with the responsibility or capacity to play a role in implementing the control measure.”

Third, participants expressed concern that diverse situations have not been taken into consideration. Many groups stated that different situations would make it difficult or impossible for many Americans to comply. For example, essential personnel, those with jobs that require face to face contact, transportation workers, utility workers and others may not be able to be isolated, work from home, or be isolated at home with their families.  In addition, rural citizens, single parents, people with special needs, migrant workers and the non-English speaking and non-educated populations have different needs that make compliance difficult. The climate and circumstances of American cities and towns makes implementation difficult as well. For example, in Syracuse winter isolation may make getting supplies to individuals a challenge.

Fourth, many participants expressed concern that the regular distribution of supplies and services will be disrupted. There will be impacts on the supply/demand structure, social services will be “strained” and there even may be a lack of “essential services” such as utilities and telephone. Groups questioned how people would get basic supplies such as medicine and food. Services such as childcare and education may also be suspended. Government functioning may even be affected since meetings and elections would be difficult.

Possible Planning Solutions:

In order to address these planning concerns, participants proposed a variety of solutions.

First they stated that details such as decision authority should be determined in advance. While some participants agreed that decisions about control measures should be made locally based on accurate information passed from federal to state officials, other participants stated that the measures “can’t be optional from state to state or locality to locality with a highly infectious disease or measures won’t be effective.” Regardless of who has decision authority, many participants agreed that there must be “strong leadership” and “consensus” across party lines.

As they struggled with the issue of coordination, some groups suggested having government, nonprofits, communities and individuals develop “contingency plans” so that they easily move to a “new normal” routine in the case of an outbreak. Exercises could be run first to see if the plan would work and to identify issues that need to be addressed. On the local level, one group suggested that we should not “reinvent the wheel.” Instead, already established alliances should be enhanced such as: “aligning food banks and human service agencies or drawing on the ability of churches and other voluntary organizations to mobilize.” In order to coordinate efforts with business, some groups suggested creating preparedness blueprints that include alternative work arrangements (such as allowing employees to work from home or share sick leave) and emergency plans. One group even suggested having insurance plans that require the implementation of preparedness measures.

In order to address diversity, the participants suggested organizing groups to help individuals at home with special needs and creating “policies and procedures” for those personnel who are essential or whose circumstances make it impossible for them to comply. One suggestion of such a policy may be to require preparation in the use of hazardous materials protection equipment for those who must work.

In order to maintain supplies and services, the groups suggested implementing creative plans such as retraining those displaced (teachers) to “fill the need for critical services such as communications, telephone or online tutoring, counseling services, food/medical provisions drop off.” Existing facilities that would be dormant (such as schools) could be used as “alternative health care facilities.” In order to distribute supplies, boxes could be delivered to homes or EMS and health care personnel could make “house calls.” Neighborhood networks could help support neighbors in need and programs such as WIC and Meals on Wheels could be adapted.  In home daycares could be developed to care for children if they are out of school and education could continue through the Internet, telephone, mail, television and home schooling.

Economic Impacts on the Population

Financial issues are the second largest concern of the participants especially in Seattle, Lincoln, and Syracuse.

In Seattle’s forum of “highly trained professionals” loss of income and potential loss of job was a big concern.  Many remarked that this more than any other factor “will ultimately drive people’s ability or desire to comply.” Many agreed that economic impacts would be felt on all levels of the economy. If people “can’t work, don’t get paid, [they] can’t spend money” however, there are no policies in place to provide some safety net or security for workers to help sustain them. They may be unable to buy the medications needed. If school were cancelled, individuals would also lose money on tuition. Since people may have no money to spend, businesses, especially those that are small, would be greatly affected. This could produce a “ripple effect” where there would be a “lack of services” after the pandemic. If large gatherings were cancelled, communities would be stressed economically with a lack of tourism, conventions, and use of transportation facilities (airports).

Possible Economic Solutions:

In response to these concerns, the groups proposed a variety of policies.  First they suggested creating governmental policies to protect individuals financially such as rescheduling debt, waiving power and tax bills and creating special subsidies for medication by extending programs like WIC. Some also suggested policies that protect people from foreclosures and evictions and that grant access to “retirement and other less- liquid funds” to protect individuals. One group suggested linking “workers’ compensation to influenza so that people can be compensated if they become ill at work.” For businesses, participants offered the immediate preparation of a government planning kit. They also suggested the creation of economic incentives for employers who encourage flex-time and working from home among their employees and who pay salaries during “the 4-6 week window.”

Informational Needs of the Population

Having adequate, trustworthy and motivational information was the third most expressed concern of participants.

Failure to have such information may fuel citizen distrust and reduce compliance since people may not know what to do or be unmotivated to comply. Many groups suggested that the first information need of the American populace is the immediate need to feel a sense of trust regarding governmental recommendations and information. In the case of a pandemic, some groups were concerned about the ability to get basic information such as the definitions of “exposed” and “illness” as well as signs and symptoms to people. Conveying this information might be problematic since “rumors run rampant and it may be hard to get credible, balanced, and timely information to everyone who needs it [specifically] persons from marginalized, non-English speakers or immigrant, and lower income communities.” There may be “multiple/conflicting messages from multiple sources.” Traditional channels of information such as the media and large gatherings will not be available since the media may “drowned out infection risk with more sensational news” and events will be cancelled. 

Possible Information/Communication Solutions:

Participants expressed a variety of ideas in order to address informational needs. First, groups proposed that the government needs to begin building trust with the American people immediately. One group stated that we “must examine critical communications pathways early on to develop the communications and educations messages beforehand and that can quickly spread to get people ready.”  Consistency among messengers and messages is important. One group suggested “having one and only one spokesperson on the national level who is credible, non-political appointee, and who they have seen and trust (e.g. Julie Gerberding), then having one main point person at the state then local levels.” These messages can convey basic information such as infection control, how to care for sick people, how to prepare at home, and what the symptoms are. They can also be persuasive in their appeals by using “historical evidence [to argue] that if everyone complied with the measures lives can be saved, [that it] will be a sacrifice for everyone, [and] . . . that this is shared responsibility.” Accurate messages will help clarify, motivate, and build trust.

During a pandemic, messages must be clear, honest, consistent and persistent. Multiple outlets could be used such as call in numbers for health questions, Public Service Announcements detailing self-care, cultural leaders like priests, rabbis and imams imparting the critical nature of compliance, educational packages in schools promoting prevention, grass roots networks diffusing urban myths, and official internet postings conveying with clarity and transparency decision making and criteria for the anti-viral. The messages must be adapted to the various multi-cultural and diverse audiences.

In short, messages should begin now, emerging from one source into a multi-channeled effort conveying creative, honest and consistent messages that should continue throughout the pandemic.

Social Stresses on the Population

Concern over the behaviors and the psychological states of the American public were the fourth type of challenge most expressed by participants, especially in Seattle and Syracuse.

Since Americans are accustomed to “civil rights and freedom of movement and assembly,” groups were concerned that individuals may not comply or may even react defensively or violently to control measures. Many groups were concerned that individuals “will not accept the sacrifice and not comply.” Noncompliance may be due to factors such as: difficulty balancing personal interests with good of community, conflicts between personal/professional responsibilities -especially for “essential personnel,” the belief that they will not be affected, the fact that many people are “stuck in a routine,” and in the case of isolation, the “fear that others may not check on me.” Participants were also worried about the psychological impacts of isolation, and canceling school and large gatherings. Individuals may feel bored and isolated since “most people are unaccustomed to not being out in public for extended periods of time.” Parents may become angered when schools are closed and youths may become “out of control.” Since there would be no social outlets or diversions, stress may increase, fuelling domestic violence, worsening the symptoms of the disease, or causing people to become complacent. Some groups expressed concern over the “reactive” nature of the American public, fearing “panic . . . hoarding rather than sharing . . . conflicts over distribution, and defense against chaos.”

Possible Social Solutions:

Participants offered a number of solutions to address the social strain of implementing control measures. First, to increase compliance, groups suggested that community leaders must step forward. They also emphasized the use of campaigns to make the changes required by implementation more acceptable. These campaigns might focus on creating social acceptability for preventative measures such as wearing a mask or “change[ing] American mentality to create a greater commitment to personal responsibility, collective responsibility and advance planning.” Finally, a few groups suggested creating some type of enforcement for noncompliance.

In order to deal with the psychological stress of isolation, participants offered “programs to keep kids out of trouble, social networks to reach out to others, and ‘creative communication’ such as teleconferences, email, cell phone, and live telephone conferences” to keep people connected.

To counter panic, group highlighted education and honest open information from trusted non-elected sources.

Summary

The Public Engagement Project on Community Control Measures for Pandemic Influenza explicitly or implicitly asked citizens three questions:

1) Should it be done? 2) Can it be done? 3) Will it be done?

The first two questions were answered in the affirmative—control measures should be implemented and can be implemented. There was a high level of support for the control measures and citizens were able to think of a number of possibly effective and practical solutions to assure successful implementation of the control measures or to mitigate against their socially disruptive effects. Thus, the participants suggested in general terms that these challenges could be addressed by multiple actions in four broad categories:

1) preparing a comprehensive, detailed plan that addresses all areas of concern,

2) instilling policies that protect workers and businesses financially,

3) crafting informative and persuasive messages that clarify and motivate, and

4) establishing campaigns and networks that meet the social needs of individuals.

Failure to implement these solutions risks failure to slow the spread of disease because it will result in failure to mobilize the necessary people and resources when and where needed at the time of the actual pandemic, failure of citizens to comply with the recommendations, failure of citizens to understand what they need to do, and a missed opportunity to reduce the social harms caused by the control measures.  Thus, these proposed solutions provide guidance to decision makers in preparing federal recommendations on these topics and they provide a good beginning for the creation of “Coordinated Action Plans” for early protection against pandemic influenza at the federal, state, and local levels.

While the question of “will it be done” was not asked explicitly of the participants and they were not canvassed about prospects for success or failure in implementation, there was not a clear conviction on the part of the participants that control measures would actually be carried out successfully. To the contrary, participants exhibited uncertainty, and in some quarters distrust, of the government’s capacity to effectively execute the necessary actions.

Given this reality that may have been reinforced by the events surrounding hurricane Katrina, a fifth challenge emerges to earn the trust and cooperation of citizens by convincing them that what needs to be done will get done. The more citizens can participate in a sound planning process, then the greater their sense of ownership of the plans and their confidence in its execution will be.  According to some participants, The Public Engagement Project on Community Control Measures for Pandemic Influenza may itself have served as a trust-building exercise for the small number of citizens who participated. Other such participatory and transparent mechanisms may be needed to assure both the soundness and the implementation of plans to slow the spread of pandemic influenza