Disease, Disaster, and Democracy: The Public’s Stake in Health Emergency Planning

This 313-page document reports on the conference on Disease, Disaster, and Democracy, May 23 2006, convened by the Center for Biosecurity of the University of Pittsburgh Medical Center as a United States (US) - Canada summit. The conference was held in collaboration with the Canadian Policy Research Networks (CPRN), the Center for Science Technology and Security Policy of the American Association for the Advancement of Science, and the National Consortium for the Study of Terrorism and Responses to Terrorism (START) of the US Department of Homeland Security. As stated in the document, "the purpose of the conference was to advise leaders in government, public health, and disaster management on the feasibility and benefits of actively engaging citizens and communities in planning for large-scale health emergencies in anticipation of (1) the ethical dilemmas posed by a scarcity of life-saving medical resources, and (2) the logistical difficulties of protecting the well and caring for the sick in large numbers. A severe pandemic of influenza served as the hypothetical case with which to test the value of this collaborative problem-solving model in relation to a health disaster."

Among the attendees were people with direct experience in the spectrum of modern disasters, such as Hurricane Katrina, severe acute respiratory syndrome (SARS), the September 11 2001 terrorist attacks on New York City (US), and the 1989 Loma Prieta earthquake. These personnel included community activists, humanitarian relief workers, volunteer organisers, medical and public health professionals, emergency managers, academics, and congressional staff and government officials.

The keynote address cited the role of volunteers in international efforts to combat infectious disease. The example used was the eradication of smallpox, depending, in Africa and South America, on the advice of village headmen, religious leaders, and school principals and on the manpower of local people, who became trained vaccinators. Using the pandemic influenza possibility, the address advocated for volunteer groups with fundamental training in some medical procedures, as well as people to help with other needs, such as delivering critical supplies and operating phone banks.

The first panel discussion focused on what government gains by engaging the public. In order to reverse resistance to change and skepticism, as well as the effects of low "civic literacy" and limited resource, panellists argued for citizen engagement because:

1. it provides evidence of citizen preferences to decision makers;
2. it creates legitimacy for public policies;
3. citizens’ skills and knowledge are developed through direct participation; and
4. civically engaged citizens can provide services that neither the state nor the market can.

Examples that supported this argument include Rotary International, which sponsors national vaccination days, in which volunteers vaccinated nearly all the children under 5 years old in Brazil and a citizen group in Houston, Texas (US), which managed 60,000 volunteers in setting up a "mini-city" at the Houston Astrodome for 65,000 Katrina evacuees.

Representatives of both the US and Canada reported on efforts to organise public involvement. Citizen Corps Councils of the US, whose members are local government officials, first responders, and civic leaders, are a "grassroots effort to make the country safer in the face of natural, technological, and terrorist-driven hazards." According to the presenter, this programme is facing the challenge of shifting from a paternalistic perspective of government leadership to getting input on preparedness prioities locally and raising the level of involvement by informed citizens.

The Canadian Public Health Agency of Canada (PHAC) is also seeking to reverse the trend of one-way communications from authorities by using the public invovlement spectrum, which includes the following range of functions:

• Inform or Educate: Perform one-way communications from officials to citizens.
• Gather Information: Listen and glean people’s opinions through polls.
• Discuss: Hold a public exchange or dialogue about issues.
• Engage: Foster mutual understanding of complex dimensions of an issue.
• Partner: Work together to conceive and implement solutions for disaster mitigation efforts even after the federal programme.

For citizen communication, PHAC uses roundtable conversations, web surveys, and other communication techniques to garner input on public health goals and priorities. PHAC also has adopted an ethical framework to help guide pandemic planning and is piloting a citizen engagement application to garner input on the prioritised use of scarce antivirals.

The second panel - moderated by Denise Gray-Felder of the Communication for Social Change Consortium - spotlighted three citizen engagement programmes focused on disaster and public health preparedness. First, Tulsans for Better Community, Tulsa, Oklahoma, US, began an effort that united organisations to help raise local consciousness about disaster mitigation. Concrete benefits included (1) passing of bond issues and new sales taxes in the interest of better flood plain management, and (2) improved relations between consumers and the local builders association regarding the construction of tornado-safe rooms in thousands of new residences.

Second, Grand Bayou Families United, Grand Bayou, Louisiana, US, seeks to assure their community’s future, by partnering with state and local government, business, the faith community, and university experts in environmental science, disaster management, and social and behavioural science. Residents have augmented authorities’ understanding of the larger environmental transformations and worked within their community to devise better ways to cope with coastal dangers.

Third, in 2005, a series of experimental public dialogues, the Public Engagement Pilot Project on Pandemic Influenza (PEPPPI), took place on how best to use the limited doses of vaccine available in the early phases of an influenza pandemic. Stakeholders from the health sector, federal and state agencies, industry, consumer advocacy groups, and minority groups took part in a national meeting, while citizens-at-large participated in a number of regional meetings, and ultimately put forth a distribution strategy with the following priorities: first, assure the functioning of society, and second, reduce individual deaths and hospitalisations due to influenza.

Summarising the citizen engagement strategy of the March of Dimes campaign for the eradication of polio, author and historian Dr. David Oshinsky described the popular movement that emerged from the campaign to raise funds by local participation, supporting researchers and leading to a double-blind clinical trial involving 2 million volunteers. The organisation introduced concepts of Madison Avenue-style public relations campaigns, celebrity advocates, and mothers’ marches to support polio victims and vaccine research.

 
The conference concluded with roundtable discussions of citizen engagement in a possible influenza pandemic. Discussants argued that vaccines, antivirals, and disease containment measures might slow the spread of the virus, but would not halt it. Major themes arising from a discussion of the likely need to prioritise vaccine recipients were:

• ethical considerations;
• the uncertainty that planning frameworks will fit the requirements of a real pandemic;
• the need for early public involvement in discussing priorities and uncertainties of a possible pandemic;
• informing the public about self-protection and self-care; and 
• the policies of distribution to countries which are not vaccine producers but may have outbreaks of the virus.

A roundtable discussion on hospitalisation focused on themes involving the likelihood that hospitals will not be able to take in all patients. Themes that emerged highlighted the roles of citizen volunteers in running phone banks, caring for children of staff, organising alternative care facilities, serving as a network for homebound families, and decreasing fear and enhancing a sense of control in times of possible chaos. The discussion included the need for community-wide pre-planning, preparation of local officials for critical decisionmaking, and coordinated public information dissemination.

The document concludes with a plan by the Center for Biosecurity of UPMC to convene a working group to release a “best principles and practices” guidance for elected officials, health authorities, and emergency managers.