Problems and Purpose

The problem was how to allocate limited supplies of vaccine during a severe pandemic when people would be at increased risk of death or hospitalization, yet vaccine supplies would be limited and there would not be enough to vaccinate everyone. The federal government wished to issue national guidance to state and local health departments on how to proceed. To this end, the public made a specific contribution by coming together, learning about pandemic influenza, engaging in give and take discussions with other persons with different views and perspectives, identifying their values around this tough choice, weighing the trade-offs, and reaching agreement on which persons were the most important to vaccinate first - those categories of persons most important to society.

Background History and Context

The government agency faced a difficult values dilemma about who to vaccinate first in a pandemic. A pilot project on Influenza vaccination was scheduled for 2005. It was determined that the best course of action would be to call on the public to make tough choices based on their values, group deliberation, and impartial information. It was part of an ongoing initiative to introduce more participatory approaches to public health decision making called “Putting the Public in Public Health”.

Organizing, Supporting, and Funding Entities

The National Immunization Program of the Centers for Disease Control and Prevention was the lead organizer and funder of this initiative.

Participating organizations included the 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 U.S. 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 (now Everyday Democracy); The Keystone Center; University of Georgia; University of Nebraska Public Policy Center. [1]

Participant Recruitment and Selection

Target groups were the general public or citizens-at-large plus representatives of key stakeholder organizations coming from all of the key sectors with recognized interests on this topic. Project organizers sought representation from all age, sex, and major ethnic groups in the US. All evaluations for the project concluded that "good diversity" was achieved in the type of participants who came.

According to the final report: 

Two to three representatives from the organized stakeholder public were chosen from approximately ten major sectors likely to be affected by the control measures (e.g. education sector), to form a 50 member national level panel. To outreach to the larger public, a sample of approximately 260 citizens from the general public representative 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. [2]

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), organizers 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.

Methods and Tools Used

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 - immunization priorities in the event of a pandemic.

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. Experts provided additional handouts and presentations where needed.

What Went On: Process, Interaction, and Participation

According to Final Reports, the project contained the following phases: Pilot phase (2005) and Phase II "Public Engagement Project on Community Control Measures for Pandemic Influenza (2007).

First, approximately 50 people (including, for instance, health care providers, members of ethnic minority and citizen advocacy organizations, representatives from federal agencies, and vaccine manufacturers) met (in July and September 2005). Among 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 immunization 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?"

Fourteen tables of participants were supported by volunteer facilitators as well as technical experts from multiple private and public organizations. 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 trade-offs associated with a national pandemic influenza vaccination program.

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 organized into several mixed interest groups to weigh the advantages and disadvantages of an initial list of possible goals for a national pandemic influenza vaccination program. 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. [1]

Influence, Outcomes, and Effects

The public engagement was successful. The government agency faced a difficult values dilemma about who first to vaccinate in a pandemic. The public made a specific contribution by coming together, learning about pandemic influenza, engaging in give and take discussions with other persons with different views and perspectives, identifying their values around this tough choice, weighing the tradeoffs, and reaching agreement on which persons were the most important to vaccinate first - those categories of persons most important to society. Creating this group product or recommendation provided "proof of principle" to these government agencies that people with diverse views could better inform public policy making on difficult values-laden policy issues. This was a clear and specific contribution to the decision making process.

According to the Secretary of Health and Human Services Mike Leavitt speaking in 2008 when the document was released, "this guidance is the result of a deliberative democratic process. All interested parties took part in the dialogue; we are confident that this document represents the best of shared responsibility and decision-making."[3]

The success of the Pilot Project led to the use of public engagement for the creation of a national vaccine strategy in 2009 under the name "Citizen Choices on the National Vaccine Plan".

Analysis and Lessons Learned

Strengthening of participants' democratic capacities was a key goal of the project. This project supported broader goals by introducing an innovative method of engaging both the citizen and stakeholder publics, showing that it works to create a productive outcome among people with different views, and showing that the public input can actually be used to shape national policy. The public's "fingerprints" were on the final national guidance document.

Use/impact:

The initial guidance issued by the Department of Health and Human Services in November 2005 was based primarily on the advice of experts in medicine and public health. It prioritized reducing individual deaths and hospitalizations and was different from the advice of the public from this first project. However, this discrepancy and the pushback received persuaded the Department to re-engage the public. It issued final guidance in 2008 reflecting many of the public’s recommendations from the second project (see below) and reaffirmed the public’s recommendations from the first project, including the advice to place higher importance on protecting those individuals who assure the functioning of society (critical occupations) rather than those at highest risk because of illness or disease.

Conclusion for public engagement:

As the first test of the new public engagement model, this project provided “proof of principle” for the vaccine and public health communities that engaging the public on a values-oriented policy decision by a federal agency setting policy for the nation is both possible and productive. It also demonstrated in conjunction with a second vaccine prioritization project that the general public weighs policy choices differently than the experts.

See Also

References

[1] Citizen Voices on Pandemic Flu Choices: A Report of the Public Engagement Pilot Project on Pandemic Influenza. (2005)

[2] The Keystone Center (2007). The Public Engagement Project on Community Control Measures for Pandemic Influenza Findings and Recommendations from Citizen and Stakeholder Deliberation Days.

[3] Bernier, Roger Harvey and Wills-Toker, Caitlin. (2014, May 22). Case Abstracts of a Multi-Year, Multi-Project Public Engagement Initiative to Better Inform Governmental Public Health Policy Decisions. Society for Participatory Medicine.

External Links

Notes

The original version of this case study first appeared on Vitalizing Democracy in 2010 and was a contestant for the 2011 Reinhard Mohn Prize. It was originally submitted by Roger Bernier of the CDC's National Immunization Program.

Lead image courtesy of the University of Nebraska Public Policy Center https://goo.gl/tk7vmE