This initiative drew on face-to-face sessions, with the support of printed and other materials, to equip citizens with the necessary knowledge to discuss - and to develop goals regarding - immunisation priorities in the event of a pandemic. First, approximately 50 people (including, for instance, health care providers, members of ethnic minority and citizen advocacy organisations, representatives from federal agencies, and vaccine manufacturers), met (in July and September 2005). Amongst the background presentations at these sessions was an ethics exercise that was designed to help participants grasp the nature of values dilemmas and the challenges incumbent in policy decisions involving competing values and no obvious right choice.
Printed materials played a role in the next step of the process, which involved mixed-interest groups (with neutral facilitators present) being asked to explore the range of values and interests that they as individuals and their constituencies deemed important to guide immunisation priorities. They were provided a handout with illustrative values, goals, and population subgroups to support their discussion of dilemmas such as this one: "You are a surgeon with 5 patients who need 5 organs. You could harvest 1 healthy patient and save all 5. Should you?" In addition, they wrestled with a series of questions, such as: "What are your deepest concerns about determining vaccination priorities?"
A key strategy for continuing to engage the community was sharing the outcomes from these small-group discussions as part of an effort to build the foundation for framing the deliberations of subsequent sessions. By highlighting the fact that their input would fill a notable gap in the first U.S. Pandemic Influenza Preparedness and Response Plan (which was released in the summer of 2004), organisers were able to entice 101 citizens to volunteer to take part in an all-day public engagement event in Atlanta, Georgia. The participants were a diverse representation of gender, age (adults from 18 to 78), and ethnicity. Fourteen tables of participants were supported by volunteer facilitators as well as technical experts from multiple private and public organisations. A discussion guide structured the deliberations of the day, which began with various presentations and exercises (accompanied by handouts, such as those including essential facts about influenza). Participants then engaged in collaborative discussions to identify and weigh the tradeoffs associated with a national pandemic influenza vaccination programme.
The approach to combining stakeholder and citizen input involved meetings, as well, which featured experts providing additional handouts and presentations in response to the group's requests for supplementary data, as well as overviews provided by citizen participants. One presenter shared evidence in an effort to debunk commonly held myths about disasters; the sharing of this information reportedly sparked subsequent discussions by the group. The stakeholders were then organised into several mixed interest groups to weigh the advantages and disadvantages of an initial list of possible goals for a national pandemic influenza vaccination programme. Using a ranking exercise coupled with additional large-group negotiations, they then developed a ranking of goals to guide vaccination policy during a pandemic influenza event. In subsequent sessions, citizens from Massachusetts, Nebraska, and Oregon listened to a presentations from local infectious diseases experts and asked questions to learn the essential facts about influenza. They then gathered into small groups to discuss and share their reactions to the highest priority goals identified in the sessions described above. The facilitator then determined the degree of support for any proposed changes.
Immunisation & Vaccines.
Organisers state that, "[a]t the outset of the project, some in the vaccine community feared the process could be disruptive by providing a platform for extreme viewpoints espoused by a small minority; that citizens could not be enticed to participate; that citizens would not be able to gain sufficient understanding of the technical issues surrounding pandemic influenza to offer useful advice; that the project would be a wild card added into the game of policy making around vaccines. No one who observed any of the multiple meetings of this project has described them as disruptive. Quite the contrary, most observers were surprised by the general public's interest in participating, their rapid grasp of the central issues, and their willingness to deliberate and make hard choices....We were genuinely moved by seeing our democracy in action-seeing very diverse groups in Washington, D.C., Georgia, Massachusetts, Nebraska, and Oregon gather in table groups and engage in respectful, often passionate dialogue, knowledgeably shoulder the burden of weighing alternatives, find common ground, answer the vaccine question of interest to policy-makers, and provide their own ideas about how to best prepare for pandemic influenza. We believe that this project has provided a much needed and timely demonstration for the vaccine community-that enhanced public engagement to address value laden issues in vaccine policy is feasible in real time and can yield useful recommendations."
Atlanta Journal Constitution; Institute of Medicine; Georgia Department of Human Resources, Division of Public Health; Massachusetts Health and Human Services; National Immunization Program at the Centers for Disease Control and Prevention; National Vaccine Program Office in the Department of Health and Human Services; Nebraska Health and Human Services; Oregon Department of Human Services; Practicum Limited; Richard Lounsbery Foundation; Study Circles Resource Center; The Keystone Center; University of Georgia; University of Nebraska Public Policy Center.
Center for Biosecurity of the University of Pittsburgh Medical Center
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
Center for Biosecurity, University of Pittsburgh Medical Center website on December 13 2007.
This project centred around the idea that the public policy process can be shaped through involving everyday citizens in participatory, face-to-face sessions. With an eye to building trust and fostering transparency, governmental agencies joined together to sought the feedback of the people as part of an effort to assure both the soundness and effective implementation of plans to slow the spread of pandemic influenza.
To conduct this public engagement, the sponsors made use of the Policy Analysis CollaborativE (PACE), a model for faciliating the participation of both the organised stakeholder public and the general public. Two to 3 representatives from the organised stakeholder public were chosen from approximately 10 major sectors likely to be affected by the control measures (e.g., the education sector, health professional organisations, the faith community), to form a 50-member national-level panel. To outreach to the larger public, a sample of approximately 260 citizens (representative by age, race, and sex) were recruited from each of the 4 principal geographic regions of the United States; they included citizens in Seattle, Washington; Syracuse, New York; Lincoln, Nebraska; and Atlanta, Georgia.
The group processes were structured to provide essential information to the participating citizens, to encourage the diverse participants to engage in discussions with each other in small groups, to weigh tradeoffs, and to reach a collective viewpoint on whether or not United States jurisdictions should implement a package of 5 community-level control measures in the event of a pandemic flu outbreak. In addition, participants were asked to identify the anticipated challenges in implementing such control measures, and what solutions might be possible for these challenges.
Specifically, in each city, citizens heard presentations from subject matter experts from CDC or from the local health departments; the strategy here involved providing participants with information - and encouraging them to ask questions of the experts - so that informed discussion about community control measures for influenza could take place. To frame the deliberations, organisers provided the citizens with a hypothetical scenario describing how an influenza pandemic might unfold in the United States, including assumptions about the severity of the pandemic, the efficacy of control measures, and possible negative consequences caused by the control measures. The citizens then participated in facilitated discussions of about 10 persons each, followed by 2 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 organisers. These results were then discussed and further refined; what emerged was the identification of 4 major categories of challenges associated with implementation of the proposed control measures (the soundness of the planning, the economic impacts on the population, the information needs of the population, and the social stresses that will be created) and they developed 13 priority recommendations for addressing these challenges (to read these recommendations, click here to access a PDF document with details beginning on page 3).
Methodologies for engaging and informing the stakeholders were similar to those described above. In addition, citizen representatives from each of the participating cities were present at the stakeholder meeting and gave their perspectives on the deliberations in their city; the stakeholders were asked to integrate the results of the citizen deliberations into their discussions, and to identify which proposed actions were considered the most important to carry out. The stakeholders participated in 4 small-group discussions organised around each of 4 categories of challenges previously identified by the citizens. They prioritised the actions proposed in the small group discussions and reconvened in a large group to present their results. A final list of recommendations was created. On day two, stakeholders also voted electronically on a series of questions designed to evaluate their level of support for the proposed control measures.
Health, Risk Management.
The Public Engagement Project on Community Control Measures for Pandemic Influenza was been chosen as co-winner of the International Association for Public Participation's 2007 Project of the Year Award (please click here for more information about this award.)
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 of an influenza pandemic when vaccine supplies are still limited. This model seeks to recruit approximately 100 citizens-at-large from the 4 major regions of the United States and a separate panel of representatives from organisations most affected by the policy decisions (stakeholders). The citizens-at-large produced their perspective on the question of interest and the panel of stakeholders met 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.
Based in Keystone, Colorado, The Keystone Center is a non-profit organisation working to equip citizens with deliberative frameworks, democratic processes, analytical information, and critical-thinking skills to approach environmental and scientific dilemmas and disagreements creatively and proactively.
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; Georgia Department 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; The Keystone Center; United Parcel Service (UPS); U.S. Department of Education; and U.S. Department of Health & Human Services.
This group of documents represents a collection of resources and discussions held internationally on addressing ethical issues raised by the possibility of a pandemic disease, such as influenza.
WHO Department of Ethics, Trade, Human Rights and Health Law (ETH) website accessed on November 27 2007; and email from Kiran Khaira, Johns Hopkins Berman Institute of Bioethics, January 11 2008.
This guideline on communicating for a crisis is designed to supplement a crisis communication plan and is for use by someone who is not a primary spokesperson or public affairs officer, but may be
Adapted from the Center for Disease Control (CDC)'s Crisis and Emergency Risk Communication Guide and Peter Sandman by the U.S.
Written as an interdepartmental United States (US) government effort on interim planning guidance for the public, this document presents a group of non-pharmaceutical (e.g., social distancing, quarant
Interim Pre-pandemic Planning Guidance, accessed on November 6 2007.
This simulation exercise, adapted from material of the United States Department of Health and Human Services, on risk and outbreak communication for pandemic influenza, was originally used in the Pan
Email from Bryna Brennan to The Communication Initiative on August 13; and Pan American Health Organization website.