Abstract

Summary: The Minnesota Pandemic Ethics Project developed ethical frameworks for rationing scarce health-related resources during a severe influenza pandemic, including implementation guidance. The Minnesota Department of Health sponsored the project and contracted with ethicists external to MDH to run it. Increasingly, deliberative processes are advocated to engage the community around policy and values questions, particularly health issues. The project team agreed that the project’s central method should encompass public engagement for several reasons:

• Rationing is controversial, rarely done explicitly, and the full range of perspectives is unknown;
• Rationing may disparately impact some community members more than others;
• Pursuing an “expert model” alone is inadvisable, because there is no well-developed, well-settled set of ethical guidelines for rationing during a severe pandemic;
• The stakes presented by rationing during a severe pandemic are high; and
• Public engagement on the topic is feasible.

The team convened a community-based resource allocation panel whose work was supported by several groups of experts. The panel’s preliminary recommendations were submitted for public comment and revised following two large community forums and nine smaller discussion groups. This article describes the sequence of public engagement methods used, the strengths and limitations of each, and how the methods fit together to form a coherent whole. Though the written comment process was useful, and made more so by the volume of comments generated from a statewide media campaign, the authors caution against relying on written comments as a substitute for robust, in-person engagement. Throughout the project, a perspective about doing what was best for the state and society as a whole was maintained. Participants were urged to articulate their justifications to themselves and each other. No matter the size of the meeting, the authors were struck by the respectful way in which participants listened to each other. The project yielded useful guidance and benefited from multiple public engagement methods and from the sequence in which they were employed.
Keywords: Public engagement, pandemic influenza, rationing, ethical framework.
Citation: Garrett JE, Vawter DE, Gervais KG, Prehn AW, DeBruin DA, Livingston F, Morley AM, Liaschenko J, Lynfield R. The Minnesota Pandemic Ethics Project: sequenced, robust public engagement processes. J Participat Med. 2011 Jan 19; 3:e6.
Published: January 19, 2011.
Competing Interests: The authors have declared that no competing interests exist.
Corresponding Author: J. Eline Garrett.

Background

The Minnesota Pandemic Ethics Project developed an ethical framework for rationing scarce health-related resources during a severe influenza pandemic.[^a] The project began in 2007 to inform the Minnesota Department of Health’s (MDH’s) pandemic influenza planning process. Supported by funding from the US Centers for Disease Control and Prevention (CDC), MDH contracted with a team of ethicists (“the team”) from the Minnesota Center for Health Care Ethics (MCHCE) and the University of Minnesota Center for Bioethics (UMCB) to develop and lead the project.

Increasingly, deliberative processes are being proposed to engage the community around policy and values questions, particularly health issues.[1] MDH and the team agreed that the project’s central method should encompass public engagement for several reasons:[2][3]

• Rationing is controversial, rarely done explicitly, and the full range of perspectives is unknown;
• Rationing may disparately impact some community members more than others;
• Pursuing an “expert model” alone is inadvisable, because there is no well-developed, well-settled set of ethical guidelines for rationing during a severe pandemic;
• The stakes presented by rationing during a severe pandemic are high;[4] and
• Public engagement on the topic is feasible.

Over the next two years the team convened a community-based resource allocation panel (“the panel”) whose work was supported by several groups of experts. The panel’s preliminary recommendations were submitted for public comment and revised following two large community forums and nine smaller discussion groups. This article describes the sequence of public engagement methods used, the strengths and limitations of each, and how the methods worked together to form a coherent whole. The perspectives about rationing gleaned from these engagements are reported elsewhere.[5]

The literature uses the phrase “public engagement” variably, sometimes encompassing those with professional stakes in the outcomes and sometimes encompassing only the general public. This project gleaned input from both groups. The authors use the phrase “public engagement” to apply to both experts and the general public.

Development of the Panel’s Preliminary Recommendations

The team and MDH recruited the panel that was ultimately responsible for recommending an ethical framework for statewide rationing of scarce health-related resources in Minnesota during a severe influenza pandemic. The panel focused on scenarios involving different types of resources:

• Prevention (vaccines, antivirals, N95 respirators and surgical masks);
• Primary care treatment (antivirals); and
• Critical care treatment (mechanical ventilators).

The resources differed not only in their purposes, but also in the nature, timing, and degree of potential shortages and possible resupply. The resources differed in the populations for whom they were indicated or contraindicated, and the expertise needed to use them ranged from little (masks) to highly specialized (ventilators).

The panel comprised approximately 45 Minnesotans. MDH and the team worked closely to compose a panel that represented a broad range of interests, expertise, and experience. Minnesota’s Commissioner of Health issued invitations. The panel included public health professionals, ethicists, health care providers, representatives from faith communities, neighborhood organizations, health plans, emergency responders, law enforcement, the court system, and advocates for people with disabilities, seniors, and children. The team–comprising persons external and neutral to MDH’s interests in the work–served on the panel, and three of the authors co-chaired it. Over 30 non-voting advisors from four state agencies, including MDH, were available to answer questions.

Six expert groups supported the panel’s work (collectively, “expert groups”):

• Four work groups on the project’s various resources (antivirals, N95s/masks, vaccines, ventilators);
• An ethics work group that analyzed philosophical and ethical issues; and
• An implementation protocol committee that analyzed implementation issues with the ethical framework. Unlike the other work groups, this committee issued its own preliminary report as a companion to that of the panel. Some of the public engagement processes reported below informed the revision of that document.[6]

The panel met in half-day sessions, approximately monthly from May 2007 through February 2008. Each of the expert groups also met approximately monthly for three hours. At the peak of the panel’s work, the project entailed seven meetings a month, each of which was three to four hours long with 15-45 people. To facilitate communication with the panel, at least two team members and one or more other panel members served on each expert group.

Early in the panel’s deliberations the team presented preliminary results of a literature review and review of pandemic plans from other states and countries that provided ethical guidance for rationing during an influenza pandemic.[7] The review, finalized in April 2008, revealed that only a handful of pandemic response plans were written for a severe pandemic; most addressed a mild or moderate pandemic. Even fewer plans offered ethical guidance for rationing in a severe pandemic.

So that its recommendations were based on a common understanding of a severe pandemic, one of the panel’s first tasks was to specify its assumptions about viral transmission, population and infrastructure impacts, and operational issues. Similarly, expert groups articulated assumptions about the resources noted above.

While the panel and expert groups finalized their assumptions, the team drafted several “single-goal” ethical frameworks for rationing each resource. Each focused on the implications of rationing based on a single, separate, ethical commitment; for instance, 1) assuring equal access, 2) saving the most lives possible, 3) redressing historical injustice for socially vulnerable groups, 4) securing long-term social and economic stability, or 5) honoring health care professionals’ duty to advocate for patients. Each outlined the principles and strategies that would follow for particular resources if that goal were to be the only basis for rationing. (See Table 1 for an example.) This approach proved a useful facilitation tool, enabling concrete thinkers (who worked from strategic implications) and conceptual thinkers (who worked from more general values and principles) to understand each other and productively debate the merits of different approaches. The panel refined the discussion aids and in the process identified strengths and limitations of each goal taken alone. From this exercise, the panel concluded that no single commitment was sufficient to guide its recommendations. Instead it chose to balance multiple commitments in its ethical frameworks for rationing.

Table 1: Implications of rationing N95s solely to achieve equal access (example of single goal framework used as a discussion aid).

The panel and expert groups worked iteratively, each building on the other’s progress. Their reflections were enhanced by extensive mutual education on a wide range of topics, including pandemic influenza, specific resources, high-risk and vulnerable populations, infrastructure, operational issues, and individual and community values. The panel refined individual frameworks for rationing each resource and blended them into a coherent package. Except for the implementation protocol committee, the expert groups that had supported the panel’s work were then disbanded. The team distilled the recommendations into a draft report, and the panel provided written feedback. A preliminary report was publicly issued in January 2009.[8]

Further Engagement of the Public

The team designed and conducted additional public engagement activities in 2009. It sought diversity among participants in such aspects as:

• Recent experience with disaster response, such as floods;
• People with and without disabilities;
• Geography;
• Race and ethnicity;
• Socioeconomic and employment status;
• Language;
• Age; and
• Gender.

The public engagement activities encompassed three methods, the target participants for which are indicated in Table 2:

• Solicitation of written comments;
• Two community forums; and
• Nine small group discussions.

Table 2: Public engagement participants.

Stakeholders offered extensive input during the development of the preliminary recommendations and in the written comments, so the forums and subsequent small group engagements were viewed as important opportunities to hear more from the general public.

Solicitation of Written Comments

The written comment period was launched in January 2009 with a media event featuring the Minnesota Commissioner of Health, the State Epidemiologist, and team members. The event generated extensive television, radio, and print media coverage statewide. The team and MDH also widely circulated invitations to comment via email, listservs and notices posted on public websites such as www.fluwikie.com.

The team posted preliminary reports online concerning ethical frameworks and implementation for public comment and mailed copies upon request. Input was welcomed on all aspects of the project, but specifically sought on these matters:

• The overarching values that should guide rationing (the most important topic for input, because the recommendations hinged on these value commitments);
• Age-based rationing (the topic about which the panel expressed the least certainty). Here the question was whether, and if so how, age should be used as a non-clinical rationing criterion when clinically significant factors (such as risk of dying from influenza and likelihood of benefiting from the resource) are equal;
• Meeting the needs of socially vulnerable groups, including addressing barriers to access (which concerned fair distribution and focused on implementation questions); and
• Access to palliative care (another topic that focused on implementation questions).

The team sought and received comments from Minnesotans and non-Minnesotans alike. Twelve organizations and 116 individuals responded, most of whom were based in or resided in Minnesota. Approximately half the comments were from individuals who said they had some experience with disaster or pandemic planning.

Community Forums

MCHCE led community forums in Duluth and Owatonna in April and May 2009 (see Figure 1). These sites extended the project’s geographic reach. A total of 200 people participated. Each forum lasted six hours and was observed by two panel members (in addition to team members) and either Minnesota’s Commissioner of Health or its State Epidemiologist, among others from MDH.

Figure 1: Map of community forum and small group discussion sites.

The CDC funded the community forums through a cooperative agreement with MDH, and the State Epidemiologist served as principal investigator. MDH staff members were integrally involved in planning the forums. Since the panel desired fresh perspectives on its preliminary recommendations, MCHCE facilitators avoided advocating for panel recommendations and functioned as neutral facilitators rather than panel members. MCHCE analyzed and summarized forum results.[5]

Local partners for community forums.
MDH and MCHCE recruited local partners for each event, who represented local public health agencies, hospitals, emergency responders, law enforcement, a tribal health organization, and other community organizations. These partners advised on date and venue selection. They also publicized the event and recruited participants. Many volunteered as breakout group facilitators or note-takers and helped to recruit others to serve in such capacities.

Recruitment of community forum participants.
Given a limited advertising budget, the team and its local partners employed a variety of recruitment activities. Local partners encouraged participation by word of mouth, making announcements at public meetings and distributing flyers at area businesses, hospitals, clinics, public gathering places, and faith communities. MCHCE sought free media coverage and was successful in securing print and radio coverage. The radio coverage reached diverse markets, with news spots and interviews on talk and music programs geared to different age groups and listening preferences. Paid advertisements were placed in local newspapers and in “shopper” circulars that were distributed freely to all residents across multiple towns and counties.

Registrations were accepted by telephone and via the web on a first-come, first-served basis. Registration was capped at approximately 130 persons for each event even though the target audience was only 100, because some attrition was expected. Registration was limited to Minnesota residents. Professionals with pandemic or disaster planning experience were actively discouraged from participating. Those who attended the full six-hour event received a modest stipend to help cover expenses and acknowledge the value of their time. Refreshments and meals were provided.

Community forums format.
Each forum opened with a presentation on pandemic influenza from the state’s Commissioner of Health or Epidemiologist, followed by a presentation about the panel’s preliminary recommendations. Participants had ample time to ask questions. Panel representatives and pandemic influenza experts were also available throughout the day to respond to questions.

Participants engaged in large group and breakout discussions concerning 1) ethical objectives for rationing and 2) age-based rationing. The breakout discussions were conducted at tables of 8-10 people, with a trained facilitator and note-taker assigned to each.

MCHCE conducted two rounds of audience polls during the day. One round of questions concerned ethical objectives, and the other asked about age-based rationing. The polls were conducted after breakout groups discussed the topics.

The last exercise of the day was for participants individually to arrange a set of picture cards, prioritizing the groups depicted in the cards for access to a scarce influenza treatment. The variables depicted in the cards were age, risk of dying from influenza, and key worker status. Participants were given complete freedom to arrange the cards in the way they thought would reflect the best approach to rationing. They could reject prioritization and lump the cards together, in which case the resources would be distributed randomly among those depicted in the cards. They could number each card sequentially, in which case those with the highest priority would receive treatment first. They could choose a middle ground in which they grouped a few cards together at each level of priority. The results were tabulated and analyzed, along with all other input gleaned during the day from discussions and polling.

Small Group Discussions

The team conducted nine small group discussions throughout Minnesota during the summer of 2009 (see Figure 1). Each group comprised 11-16 people, for a total of 125 participants. Each lasted six hours on a single day or three hours on two successive evenings. There was no attrition in the six discussion groups that were split into consecutive evenings. Participants received meals appropriate to the time of day and stipends to offset their expenses and acknowledge the value of their time.

Local partners for small groups.
A local organization or individual was retained in each community to provide advice and logistical support and to manage recruitment. Different kinds of organizations (or individuals with varying connections) were tapped in each community, so that their varied methods of connecting with their communities could assist with diversifying public input. Local partners included:

• A local public health agency, whose proximity to the county’s human services agency made it possible to recruit people receiving public assistance, including homeless people and other residents in the area, most of whom had experienced a recent flood disaster;
• Courage Center, a nonprofit organization serving people with disabilities;
• the community education division of a public school district;
• an active member of the League of Women Voters;
• a tribal health division;
• a branch of the Urban League;
• a free clinic in an ethnically diverse, low-income urban neighborhood;
• a local Rotary Club; and
• a neighborhood organization serving an ethnically diverse neighborhood.

Local partners provided advice and assistance in date and venue selection. They also suggested which format (all-day or two successive evenings) would work best in their community.

Recruitment of small group participants.
Local partners recruited participants by word of mouth, obtaining free coverage in local print news media, and distributing flyers liberally. No paid advertisements were used. Health care professionals and people with expertise in disaster or pandemic planning were discouraged from registering for the events. Recruitment targets were met for all events, and in a few cases interested people were turned away for lack of space.

At Courage Center, recruitment was targeted to people with disabilities who had sufficient oral communication capacity and physical endurance to participate in two three-hour sessions. Courage Center was compensated for providing personal care attendants for participants who required them.

Format of small groups.
The team patterned the nine small group engagements on the preceding community forums. The methods employed were similar, and the length was the same. As with the community forums, team members functioned as neutral facilitators. The small group format allowed deeper discussion and exploration of an additional topic (that focused on implementing guidance about alleviation of access barriers), because there was no need to switch back and forth between large and small group discussion. Audience response technology was not used. As with the community forums, the small groups began with oral presentations and time was provided for questions and answers.

At Courage Center, several participants lacked the physical dexterity to arrange a set of cards during the concluding exercise. The facilitator gave participants two options, one of which was breaking into 4-person groups to arrange the cards with the assistance of a team member. Instead participants chose a second option: projecting the cards on a screen and discussing them together as one group. The team noted the various arrangements that were proposed and the justifications offered in support of each.

Final Recommendations

The panel and the implementation protocol committee reconvened in August and October 2009 to consider input from the large and small group engagement processes and from those who submitted written comments. Both meetings were productive, and recommendations were revised in light of input from the public.[5] [6]

Two of the matters brought to the panel for consideration–the role of fairness as a rationing criterion and whether and how to consider age as a non-clinical criterion–prompted the most discussion and revision of recommendations. The panel was later polled on both issues via email to ensure that the revised recommendations reflected its discussion and benefited from input from those unable to attend the meeting.

Demographics

The team did not collect demographic data about the panel. Most panel members were from the Twin Cities metropolitan area, though some were from greater Minnesota. Most panel members appeared to be white, though the team and MDH recruited racially and ethnically diverse participants from professional and community organizations. Most were middle-aged, but representation was also sought from retired people and seniors as well as young adults. Two-thirds were female.

Participants in the large and small group engagements, as well as those who submitted written comments, were asked to provide demographic information (gender, age, race/ethnicity, and residence). Additional demographic data about the community forums were collected, including income, level of education and number of children at home. This article highlights some of the demographic data, and more information is available from the authors.

Though racial and ethnic diversity was sought in all aspects of the project’s public engagement processes, the team used the small group discussions specifically to reach racially and ethnically diverse populations. For example, at a small group engagement conducted in partnership with a tribal health organization, 11 of 14 persons volunteered demographic information. Of those 11, 10 identified themselves as American Indian or Alaska Native, one as white and one as Native Hawaiian or other Pacific Islander (some identified with more than one race or ethnicity). In one urban neighborhood all 12 participants volunteered demographic data, 11 of whom identified themselves as black. Two other events were conducted in urban neighborhoods chosen because of their racial and ethnic diversity, and communities in greater Minnesota were also selected, in part, because of racial and ethnic diversity. Community forum participants were generally representative of the race and ethnicity census profiles of their communities, although at the Duluth forum people identifying as Hispanic or black were over-represented.

The public engagement processes were limited to adults, within which a wide range of ages participated. In general, older people were over-represented, and younger people under-represented. The in-person engagements were limited to Minnesota residents. Approximately 10% of the individuals who submitted written comments were non-Minnesotans.

Discussion

This project comprised a range of methods that exemplify deliberative public engagement, the process of soliciting public input for the creation of policy.[9] Aggregation of individual preferences was de-emphasized, in favor of a focus on the common interest.[10][11] The team did not seek consensus in the community forums and small discussion groups, but captured participants’ agreements and disagreements.

This project began with the panel’s development of preliminary ethical rationing recommendations, supported by expert groups. The panel was chosen carefully to represent a broad range of interests and perspectives, and it was tasked with addressing a full range of issues associated with rationing health resources during a severe pandemic. From a blank slate, it considered what kinds of rationing criteria–both clinical and non-clinical–would be acceptable. It struggled with broad ethical and policy issues and very tangible, concrete implications of different rationing schema.

Recruiting panel members was time-consuming but made easier with the State Health Commissioner’s invitations. It was difficult to reconvene the panel for its final meeting after more than a year, and the panel suffered some predictable attrition in 2009 due to job changes and scheduling conflicts. Scheduling a meeting about a hypothetical, severe pandemic while in the throes of responding to the H1N1 pandemic was challenging.

The team’s employment of small group exercises during early meetings helped build panel members’ confidence in confronting complex ethical and policy issues and contributed to the panel’s cohesion. Small group exercises were unnecessary in later panel meetings. Discussing single-goal frameworks proved beneficial in facilitating clear communication about rationing objectives, criteria, and implications. Some panelists were more linear in their thinking than others. Some were more vocal. Clear discussion aids, small group exercises and carefully planned agendas allowed panelists to work productively despite differences in communication and thinking styles.

Throughout the panel’s deliberations, the team employed case studies that were focused on particular resources. It quickly became evident that the panel would need to tailor individual frameworks for each resource, scalable to different levels of scarcity. Absent the case-study approach, it is possible that the panel’s guidance would have been rendered at too general a level to be useful in an actual pandemic.

The iterative relationship between the panel and expert groups proved essential to the panel’s understanding of pandemic influenza and the various resources the panel was tasked to consider. The expert groups also helped the panel cover more ground quickly, because each was charged with offering rationing frameworks for the panel’s review and refinement.

As funding became available to expand the public engagement process, the panel–itself a group providing public input to MDH–became the recipient of additional public input.

The team carefully considered potential methods and chose which to employ, and when. Methods employed at the beginning of the process (panel input and written comments) allowed more time for input, so the issues for consideration in those venues were quite broad. The community forums and small groups, limited to six hours each, did not offer an opportunity to explore the same number of issues. The team focused those discussions on the most critical and least settled topics. Participants raised other topics in writing on index cards and discussed them as time allowed (see Table 3).

Table 3: Public engagement topics.[^b]

After the preliminary recommendations were issued the team solicited written comments, because results could be used immediately to inform upcoming in-person engagements and later to inform refinement of the panel’s recommendations. The team highlighted issues on which public input would be particularly useful, but also encouraged input on other issues of interest to respondents. It sought input from people with subject-matter expertise, as well as the general public. The written comment solicitation was launched with a statewide media event to invite comments from as broad a population as possible, both inside and outside the state. Written comments varied dramatically in their length and content. Collectively, they depicted a range of comments, concerns, and affirmations that were echoed and greatly expanded upon during the in-person public engagement activities. The team and MDH were pleased with the number and range of written comments and attribute the volume to the media campaign’s success. The authors caution, though, against relying on written comments as a substitute for robust in-person engagement, which in this project generally fostered richer input.

After soliciting written comments, the team conducted the community forums. The team considered but rejected conducting the small groups before the community forums. Instead, it chose to use the small groups not as traditional focus groups to test methods but as opportunities to delve deeper into the issues raised in the forums.

The team improved the individual exercise involving arranging picture cards over time. Specifically, the team decided to incorporate more time for discussion of the ways individuals chose to arrange the cards. This was the only methodological refinement that in retrospect might have warranted conducting pilot focus groups before forums.

The decision to conduct the forums first proved advantageous, as illustrated by the input on the topic of fairness as a rationing objective. The panel’s preliminary recommendations contained an ethical principle to “treat people fairly.” Forum participants often viewed fairness as too lofty a goal. Frequently, the argument was that life isn’t fair, getting sick isn’t fair, and trying to be fair during a disaster would be impossible. Others opined that fairness is in the eye of the beholder: What one person sees as fair could feel terribly unfair to another. These concerns with fairness were voiced at both community forums in Owatonna and Duluth, and to a much smaller extent in the written comments. Had the public engagement process stopped there, the panel could have been faced with a difficult decision about whether to abandon the fairness principle because of concerns raised during the community forums.

The small groups offered an important opportunity to delve into perspectives about fairness more deeply. In the small groups many people expressed concerns with the ambitiousness or appropriateness of the fairness principle. Yet, when given time to discuss the particular ways in which fairness was described (such as not rationing based on gender, race, ability to pay or first-come, first served), the people who objected to the term “fairness” generally embraced the specific strategies and goals associated with the fairness principle. The small groups also afforded the opportunity to elicit concrete suggestions for removing barriers to fair access to resources during a pandemic. Thus, it became clear that the fairness principle needed to be restated. Based on public input, the panel rephrased the fairness principle as an aspiration, ie, “strive for fairness” and emphasized specific ways in which fairness could be achieved.[5] Public input also informed the implementation report’s discussions about fairness and access barriers.

Another important finding concerned non-clinical, age-based rationing. While the vast majority of participants endorsed age as a rationing criterion, there was less clarity about what age groups should be prioritized, when and why. The panel’s final recommendations about age reflect that ambiguity and were offered as tentative, secondary criteria.[5]

The team was struck by the participants’ concluding comments. Most expressed sincere appreciation for the opportunity to provide input. They valued the educational opportunity and voiced a new understanding of the complexity of pandemic-related policy making. The events were not disconnected from political, economic, and cultural experiences, so events in a few communities were at times marked by mistrust. Even in these events, participants valued the opportunity to learn about pandemic influenza and provide input into the state’s process. They expressed empowerment to extend pandemic education and planning into their communities. Many participants were effusive, explicitly stating the value of the democratic process to allow citizens a voice in policy making.

Good public engagement requires decision makers to commit to considering public input in their decision making process.[3][12] The panel demonstrated its commitment to the additional public engagement processes in this project by reaffirming the recommendations that the public supported, restating confusing recommendations, and revising recommendations on which there remains uncertainty and disagreement. MDH demonstrated its commitment throughout the project by dedicating substantial leadership and staff time and by securing funding repeatedly to expand the project over time.

The emergence of the novel H1N1 influenza virus and pandemic offered an additional, real-time opportunity to see MDH’s commitment to the public engagement process. Though this project concerned a potential, significantly more severe pandemic, MDH found the project’s public input useful in shaping aspects of its H1N1 response, particularly guidance about removing barriers to fair access. For example, one of the project’s themes was the importance of ensuring fair access regardless of individual ability to pay. This input catalyzed MDH’s collaboration with other partners in developing the Minnesota FluLine, which, among other services, was designed to provide both insured and uninsured influenza patients with timely access to clinical consultations and antiviral treatments during the H1N1 pandemic.

Conclusion

As the Commissioner of Health assured more than once, the project’s ethical guidance needed to reflect the “fingerprints and footprints” of as many Minnesotans as possible.[13][14] Throughout the project, a perspective about doing what was best for the state and society as a whole was maintained. The most common question asked of participants was, “Why?” Participants were constantly urged to articulate their justifications to themselves and each other. At times this helped affirm their positions; at others it changed their minds. No matter the size of the meeting, the authors were struck by the respectful way in which participants listened to each other, even though the emotion of the topic occasionally inspired fear and even tears. Though consensus on every recommendation was not achieved, increased clarity and understanding were. The project yielded useful guidance and benefited from multiple public engagement methods and the sequence in which they were employed.

Endnotes

a. The 2009 H1N1 pandemic was declared while this project’s public engagement activities were being completed. The project remained focused on a hypothetical, severe pandemic. Some of the themes that emerged helped inform MDH’s H1N1 response, but fortunately MDH did not need to resort to the recommended ethical frameworks because rationing objectives and resource scarcity in a severe pandemic differ in important ways from more moderate public health emergencies. MDH followed federal guidance about priority groups for H1N1 vaccine.↩

b. These topics are also discussed in the implementation report, particularly palliative care and barriers to accessing resources. ↩

References

1. Lehoux P, Daudelin G, Demers-Payette O, Boivin A. Fostering deliberations about health innovation: what do we want to know from publics? Soc Sci Med. 2009;68(11):2002-2009. ↩
2. Vawter DE, Gervais KG, Garrett JE. Allocating pandemic influenza vaccines in Minnesota: recommendations of the pandemic influenza ethics work group. Vaccine. 2007;25(35):6522-6536. ↩
3. Garrett JE, Vawter DE, Prehn AW, DeBruin DA, Gervais KG. Listen! the value of public engagement in pandemic ethics. Am J Bioeth. 2009;9(11):17-19. ↩
4. Principles of the Ethical Practice of Public Health. New Orleans, LA: Public Health Leadership Society; 2002. Available at: http://www.apha.org/NR/rdonlyres/1CED3CEA-287E-4185-9CBD-BD405FC60856/0/ethicsbrochure.pdf. Accessed June 9, 2010. ↩
5. Vawter DE, Garrett JE, Gervais KG, Prehn AW, DeBruin DA, Tauer CA, Parilla E, Liaschenko J, Marshall MF. For the Good of Us All: Ethically Rationing Health Resources in Minnesota in a Severe Influenza Pandemic. St. Paul, MN: Minnesota Center for Health Care Ethics and University of Minnesota Center for Bioethics; 2010. Available at: http://www.health.state.mn.us/divs/idepc/ethics/. Accessed January 12, 2011. ↩
6. DeBruin DA, Marshall MF, Parilla E, Liaschenko J, Leider JP, Brunnquell D, Garrett JE, Vawter DE. Implementing Ethical Frameworks for Rationing Scarce Health Resources in Minnesota during Severe Influenza Pandemic. Minneapolis, MN: University of Minnesota Center for Bioethics and Minnesota Center for Health Care Ethics; 2010. Available at: http://www.health.state.mn.us/divs/idepc/ethics/. Accessed January 12, 2011. ↩
7. Prehn AW, Vawter DE. Ethical Guidance for Rationing Scarce Health-Related Resources in a Severe Influenza Pandemic: Literature and Plan Review. St. Paul, MN: Minnesota Center for Health Care Ethics and University of Minnesota Center for Bioethics; 2008. Available at: http://www.health.state.mn.us/divs/idepc/ethics/. Accessed January 12, 2011. ↩
8. Vawter DE, Garrett JE, Gervais KG, Prehn AW, DeBruin DA, Tauer CA, Parilla E, Liaschenko J, Marshall MF. For the Good of Us All: Ethically Rationing Health Resources in Minnesota in a Severe Influenza Pandemic [preliminary report]. St. Paul, MN: Minnesota Center for Health Care Ethics and University of Minnesota Center for Bioethics; 2009. ↩
9. Bohman J, Rehg W, eds. Deliberative Democracy: Essays on Reason and Politics. Cambridge, MA: The MIT Press; 1997. ↩
10. Gastil J, Levine P, eds. The Deliberative Democracy Handbook: Strategies for Effective Civic Engagement in the 21^st Century. San Francisco, CA: Jossey-Bass; 2005. ↩
11. De Vries R, Stanczyk A, Wall IF, Uhlmann R, Damschroder LJ, Kim SY. Assessing the quality of democratic deliberation: a case study of public deliberation on the ethics of surrogate consent for research. Soc Sci Med. 2010;70(12):1896-903. ↩
12. Jacobs LR, Cook FL, Delli Carpini MX. Talking Together: Public Deliberation and Political Participation in America. Chicago, IL: University of Chicago Press; 2009. ↩
13. Sanne Magnan, MD, PhD, Minnesota Commissioner of Health. Public statement at: Minnesota Department of Health Media Event; January 30, 2009; St. Paul, MN.↩
14. Sanne Magnan, MD, PhD, Minnesota Commissioner of Health. Public statement at: Minnesota Pandemic Ethics Project Community Forum; May 2, 2009; Duluth, MN. ↩

Acknowledgments

The Minnesota Pandemics Ethics Project would not have been possible without the contributions of other project team members, national and local partners and colleagues from state government, private and nonprofit sectors and academia. These persons and organizations, too many to name here, are listed in the project reports, For the Good of Us All: Ethically Rationing Health Resources in Minnesota in a Severe Influenza Pandemic and Implementing Ethical Frameworks for Rationing Scarce Health Resources in Minnesota during Severe Influenza Pandemic. The authors acknowledge generous project support and funding from the Minnesota Department of Health and US Centers for Disease Control and Prevention. The Minnesota Center for Health Care Ethics acknowledges additional financial support for preparation of this manuscript from the Association of State and Territorial Health Officials. Above all, the authors acknowledge the participants who so generously contributed their time, attention, and wisdom during the project’s public engagement processes.

Copyright: © 2011 J. Eline Garrett, Dorothy E. Vawter, Karen G. Gervais, Angela Witt Prehn, Debra A. DeBruin, Franci Livingston, Angela M. Morley, Joan Liaschenko, Ruth Lynfield. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the authors, with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.