-Prince Shotoku, 574-622AD, a regent and politician of the Imperial Court of Japan
"So what are we supposed to do with our children?" a woman asks plaintively. "If we leave them at day care, you say they might get very sick. But I am a single mother and I have to go to work. So what am I supposed to do?"
This woman was speaking at one of four public meetings convened by the CDC and facilitated by The Keystone Center to hear public views about Community Control Measures that will work and have some problems in communities around the country.
Experts say chances of a deadly worldwide outbreak of pandemic flu are increasing. Early in such an outbreak, the United States will need to put in place community control measures to limit the outbreak. Should this situation arise, it leads to difficult decisions about what communities around the country will need to do to stop or limit the spread of a pandemic flu outbreak.
The CDC had a need to develop and issue guidance to communities and public health departments throughout the country on how best to control pandemic influenza in the early days of an outbreak when vaccine is not available. During this early period, community control measures such as 1) treating sick persons at home, 2) keeping those who have been in contact with sick persons at home in isolation/quarantined, 3) closing schools, 4) cancelling large gatherings, and 5) altering work schedules and work patterns, which might be the only measures available to slow the spread of the infectious viral pandemic in a community and throughout the country.
Since 2003, a growing number of human Avian Influenza (H5N1) cases have been reported in Asia, Europe, and Africa. More than half of the people infected with the H5N1 virus have died. Most of these cases are all believed to have been caused by exposure to infected poultry. There has been no sustained human-to-human transmission of the disease, but the concern is that H5N1 will evolve into a virus capable of human-to-human transmission.
The Keystone Center, with support from American State and Territorial Health Officials (ASTHO) in conjunction with the CDC, planned and convened a series of stakeholder and public citizen meetings in the Fall of 2006 to help assess what measures are seen as the most effective and the most in tune with individual values in the case of a world-wide flu epidemic. The recommendations emerging from the process provide guidance to decision-makers in preparing federal recommendations on these topics and they provide a good beginning for the creation of multilevel and multi-sector "Coordinated Action Plans" for early protection against pandemic influenza.
The Public Engagement Project on Community Control Measures for Pandemic Influenza won the International Association for Public Participation's (IAP2) 2007 "Core-Values Project of the Year award." It was selected because the work of the three sponsoring agencies and all of the individuals who created the CDC Community Engagement Projects carried it out with the belief that citizens who would be most affected by social disruption and economic consequences associated with the community control measures if implemented, should have a voice in whether or not the proposed measures are acceptable, how they can be implemented, and how any negative consequences of these measures might be mitigated.
To conduct this public engagement, the Keystone Center, ASTHO, and CDC used Policy Analysis CollaborativE (PACE) [http://www.keystone.org/spp/health-pandemic.html ], an innovative model for engaging both the organized stakeholders and the general public comprised of citizens-at-large [The process aimed to maximize public input over a short period of time at each meeting: Citizens at large came together in a comfortable facility; federal, state and regional experts provided the background and information necessary for people to understand and respond to the issues; neutral convening and facilitation was provided throughout the process; individual small group discussions occurred, allowing all participating to voice their opinions and concerns; and an anonymous electronic polling instrument was utilized allowing all involved to give voice to an opinion after a thorough education and question and answer period occurred. The results achieved were: Over 300 people participated, from diverse backgrounds and regions of the country. The project sought to put the "public" in public health by effectively allowing people to participate in policy development and helped the CDC create a policy on community control measures which reflects the sentiment of the citizens.
Two to three representatives from approximately ten major sectors likely to be affected by the control measures (e.g., education), were formed into a 50-member national panel. To reach to the larger public, a sample of approximately 260 citizens from the general public, disparate by age, race, and sex, were recruited from each of the four principal geographic regions of the United States and included citizens in: Seattle, Washington; Syracuse, New York; Lincoln, Nebraska and Atlanta, Georgia. The meetings were structured to provide essential information to the participants, to encourage the participants to engage in discussions with each other in small groups, to weigh tradeoffs, and to each a collective viewpoint on whether and how to take action.
The Public Engagement Project explicitly or implicitly asked citizens and stakeholders three questions: 1) Should control measures be undertaken by government? 2) Can they be implemented? 3) Will the government do it?
The first two questions were answered rather quickly in the affirmative: control measures should and can be implemented. There was strong support for the control measures and citizens and stakeholders were able to think of a number of possibly effective and practical solutions to assure successful implementation or to mitigate against their socially disruptive effects.
The stakeholders worked through all of these ideas and identified four categories of challenges which must be addressed: 1) Failure to implement these recommendations risks; 2) Failure to mobilize the necessary people and resources at the time of the actual pandemic; 3) Failure of citizens to comply with the recommendations and failure of citizens to understand what they need to do and 4) A missed opportunity to reduce the social harms caused by the control measures.
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, they lacked a clear conviction that control measures would actually be carried out successfully. Indeed the participants exhibited uncertainty, and in some quarters distrust, of the government's capacity to effectively execute the necessary actions.
The Recommendations - Implementation of Control Measures
The thirteen priority recommendations to address these challenges were:
To ensure sound planning & preparation:
1. Engage different levels of government and all key sectors of the community in the development of a detailed and fully-coordinated plan.
2. Conduct the planning work in the most transparent and highly visible ways possible to build public trust.
3. Conduct needs assessments to measure and track "pandemic wellness" or "pandemic readiness" scores for both individuals and communities.
4. Create incentives for employers to conduct business "continuity of operations" plans and communicate effectively what employers will expect from their employees and what supports employers will make available to lessen the burdens of the pandemic on employees.
5. Train elected officials for the leadership roles they are unfamiliar with now but will have to fulfill in a pandemic emergency.
6. Develop special focused plans for maintaining the personnel and infrastructure that will be needed to meet surge in demand for health care and the disruption of critical community services.
7. Develop clear and useful guidance for making ethical decisions around the use of scarce resources and other difficult value-laden choices in a severe pandemic.
To avoid undue economic disruptions:
8. Modify workplace policies or create new programs to relax the requirements on employees and to make it easier for them to bear the financial and family care burdens of the pandemic.
To meet the information needs of the public:
9. Conduct an ongoing public education campaign before the pandemic strikes which provides necessary and straightforward information about the control measures, pandemic influenza, and preparedness.
10. Create messages prior to and during the pandemic that motivate expectation that compliance is a socially desirable and necessary behavior with positive benefits for all.
11. Establish specific mechanisms at the federal, state, and local levels for "just in time" communication when the pandemic arrives.
To reduce the social stresses of the pandemic:
12. Connect existing community organizations and volunteer groups into social networks that can deliver information, services and social or psychological support needed to weather the pandemic.
13. Link providers in the social networks in advance of the pandemic with the people in need, paying particular attention to the most vulnerable populations.
Ninety-five percent or more of the citizens and stakeholders supported encouraging sick persons to stay at home, and the same high percentage supported canceling large public gatherings and altering work patterns to keep people apart. A slightly lower percentage--approximately four out of five citizens and stakeholders (83-84%) -- supported encouraging the non-ill contacts of sick persons to stay at home and a similar percentage favored closing schools and large day care facilities for an extended period. Approximately two thirds of both citizens and stakeholders (64-70%) supported all five control measures. Furthermore, citizens and stakeholders supported early implementation of the package of control measures with nearly half (44-48%) supporting implementation when pandemic influenza first strikes the U.S. and approximately one-third of the public supporting implementation when influenza first strikes their state. A relatively low percentage of citizens (4-15%) wanted to wait until influenza first strikes their community before beginning to implement control measures.
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 those citizens who participated. Greater use of this model or other such participatory and transparent group process mechanisms may be needed to assure both the soundness and the implementation of plans to slow the spread of pandemic influenza. A full evaluation of the project was conducted by the independent University of Nebraska Public Policy Center, titled "Evaluation of the Public Engagement Project on Community Control Measures for Pandemic Influenza" [http://ppc.unl.edu/publications/documents/PEPPPI_FINALREPORT_DEC_2005.pdf ]
The report concluded that the project met its 9 major goals:
1. Attract citizens to participate in the public meetings in four locations: Georgia, Washington, New York, and Nebraska.
2. Recruit participants with diverse perspectives and demographic characteristics such as age, gender, race/ethnicity, education, and income.
3. Understand what motivated citizens to participate in the process
4. Provide information to participants so they have sufficient knowledge about pandemic influenza to adequately consider and discuss community control measures. (The process results in a balanced, honest, and reasoned discussion of the issues while respecting diversity of views.)
5. The process results in a balanced, honest and reasoned discussion of the issues while respecting diversity of views.
6. Citizens and stakeholders deliberate and consider multiple points of view and the process affects the opinions and judgments of participants related to values and implementation of community control measures.
7. Citizens contribute useful information for the stakeholder deliberations, and stakeholders considered and integrated citizen input into their recommendations.
8. Citizens and stakeholders are satisfied with the process and believe their input will be considered by decision-makers.
9. Citizen and stakeholder input receives serious consideration by decision-makers and adds value to the input already being received from expert groups.
While the independent review and the award point to a successful public engagement process, some things could have been done better with the benefit of hindsight. The partners in the project would have liked to have had: a larger pool of public citizens involved form a broader region of this country; more time allotted for in-depth discussion with a more diverse group of experts from the local, state and federal sectors; more meeting time than six hours on a Saturday. It also takes time to prepare for these meetings and most of them occurred with a time span of less than 8-12 weeks from initial contact with a community to the meeting itself. A three to four month time period for pre-planning and working in the community on recruitment to get the most desirable mix of people which represent the demographics of the local community would yield better and more consistent results. We learned that people do want to participate in major policy issues and value the government's willingness to listen.
The mother who asked the earlier question about what to do with children attending day care learned that day care centers will likely be closed for an extended period of time at time of a pandemic outbreak for fear that such a place will promote the disease rather than help children and others avoid contracting the pandemic virus. This mother and all involved were able to share their insights about what would work and what would not within their own region of the country. All such information was helpful to the CDC in creating the final Guidance on Community Control Measures which will be used throughout the US at time of a pandemic outbreak as well as for future pandemic planning efforts.
Doug Thompson and Don Greenstein are Senior Mediator/Facilitators at the Keystone Center. Their work involves public community engagement, facilitation and mediation of highly technical, environmental, and health related projects. This article was written collaboratively, with the invaluable help of both Catherine Morris, Sr. Associate and Director of the Keystone Energy Practice Area, and Justin Kram, able intern and 2003 Brown University graduate. The article would never have been completed without their initiative, input, and support.
Thompson spent over twenty-five years with USEPA in various regional technical and management capacities, including chief of wetland protection and chief of water enforcement. As part of EPA's dispute resolution program he served as a mediator and facilitator for a number of environmental issues as well as working on assignment as a program associate to the U.S. Institute for Environmental Conflict Resolution in Tucson, Arizona during 1999.
Greenstein is a "reformed lawyer" after 15 years of Government service (Dept. of Justice, US Navy, US Postal Service) whose work has involved environmental, health, tribal, community, work place, inter personal as well as cross-cultural conflict resolution. He is trained as a critical incident stress manager (CISM) and has supported the EPA peer CISM team. -- For more details on the Public Engagement Pilot Project on Pandemic Influenza (PEPPPI), go to www.keystone.org/spp/health-pandemic.html .