This public engagement practice was designed to better understand the public’s values regarding the delivery of medical services during a severe pandemic influenza. A severe influenza pandemic will have profound impacts on the healthcare system. Rationing of scarce medical resources and alterations in health care delivery standards are widely acknowledged to be necessary components of a response to large-scale health emergencies. Local health departments, ethicists and the health care sector cannot create a rationing system on their own. When resources are severely limited, an anxious public will scrutinize decisions about access to life-saving resources. A robust system that reflects community values is critical to ensure support of that rationing system. Institute of Medicine (IOM) guidance issued in the fall of 2009 includes public participation as a key action step to developing crisis standards of care.
This practice aims to better understand the public’s values and priorities regarding the delivery of medical services and how those services will be allocated during a severe pandemic influenza. The three objectives of this public engagement are:
1. Obtain feedback and recommendations from a diverse range of community members and stakeholders regarding prioritization of medical services during a severe pandemic, and how those services will be allocated.
2. Explicitly define the community and stakeholder values underlying the above recommendations.
3. Share the results of the public engagement process with local, regional, and national leaders.
The public engagement is critical to help ensure the incorporation of the community’s values and priorities into the policies, plans, and guidelines that a local health department develops for the region. Broad participation contributes to sound, sustainable, and widely supported public health management policies and practices. The practice collects in-depth feedback from the public and stakeholders on what they feel is a fair and ethical approach to rationing scarce medical resources. By soliciting recommendations, synthesizing those recommendations and reporting back to policymakers and leaders, this practice fills a gap in policymakers’ knowledge of community opinions and values—allowing them to move forward with pandemic flu preparedness and health care disaster planning.
The project culminated in four, eight-hour public meetings. There was considerable agreement among participants at all four meetings on the need for altered decision-making process for prioritization of scarce, life-sustaining medical resources during times of disaster. Diverse residents of King County and representatives of health care, management and other key stakeholders agreed that prioritization of medical services should aim to save the greatest number of people, factoring in survivability of those treated, even if standards of care must be lowered. The results of the meetings were shared with ASTHO, CDC, NACCHO, the Institute of Medicine, Center for Biosecurity of UPMC, and Washington State Joint Conference on Health.
Rationing of scarce medical resources and alterations in the standards of healthcare delivery are widely acknowledged to be necessary components of the response to large-scale health emergencies. A severe influenza pandemic, for example, will have profound impacts on the healthcare system. Using the Centers for Disease Control and Prevention (CDC)’s modeling software, a Severity five pandemic influenza event estimates a 30% gross attack rate with a case fatality ratio of at least 2%. In King County, with a population of 1.8 million, that means that over a theoretical time span of an eight-week event, about 540,000 adults would be ill, requiring 60,000 hospitals beds during the course of the epidemic, and 270,000 excess outpatient medical visits. More than 11,000 of the ill would die. Demand for medical beds would require approximately 40% of the available beds in a moderate pandemic and over 250% of available beds in a severe pandemic, when many hospitals operate close to capacity during everyday operations. In addition, shortages of resources like healthcare staff, medications, and medical supplies and equipment—including ventilators to help ill patients breathe—are expected.
Local health departments, ethicists and the healthcare sector cannot create a rationing system on their own. When resources such as ICU beds and ventilators are severely limited, an anxious public will scrutinize decisions about access to those life-saving resources. A robust system that reflects community values is critical to ensure support of that rationing system. Guidance issued in 2009 by the Institute of Medicine on Crisis Standards of Care includes public participation as key action steps for developing crisis standards of care. Despite the significant impact on the community, there has been little public dialogue on these issues. This project was designed and implemented to better understand the public’s values and priorities regarding the delivery of medical services during a severe pandemic influenza, including priorities for access to limited life-sustaining medical resources.Community partners were essential in advising project staff on the relevancy of this issue to the public, especially as medical service prioritization during disaster is unfamiliar to almost all members of the public. Representatives from human service organizations served on the steering committee and helped determine the goals and focus of the public engagement meetings, alongside emergency managers, healthcare providers, and policy makers. For example, the community partners on the steering committee kept the focus on core ethical questions about allocation of scarce medical resources rather than specific nuances of medical triage tools.
Furthermore, project staff conducted key informant interviews with additional representatives from community-based organizations and members of the public when developing the tools used for public engagement to ensure that they reflected actual perspectives from the community. Key informants were asked their opinions about such issues as who should be prioritized for care, what difficulties their communities face with access to healthcare, what their concerns would be about getting health care during a severe pandemic, and what they already knew about pandemic influenza. This formative research informed the design of materials used and the educational information needed to conduct an effective and meaningful public engagement meeting.This practice aims to better understand the public’s values and priorities regarding the delivery of medical services and how those services will be allocated during a severe pandemic influenza. The practice collects in-depth feedback from the public and stakeholders on what they feel is a fair and ethical approach to rationing scarce medical resources. By soliciting recommendations, synthesizing those recommendations and reporting back to policymakers and leaders, this practice fills a g
Agency Community RolesThe project director and program staff were all employees of Public Health – Seattle & King County (PHSKC). The project director led the meeting design process and liaised with leadership in the health department and the consultant group. The project manager planned the logistics of the meetings, including finding appropriate venues, tracking the budget and contracts, and leading the participant recruitment outreach. Additional support included local health department staff, who provided expertise on Q-methodology expert and community partnerships. In addition, the Preparedness Section Manager and the Chief of the Communicable Disease Epidemiology and Immunization sections of the health department were members of the steering committee. As members of the steering committee, they helped identify goals, design the meeting process, and provide input and review to the final report. They were also instrumental in recruiting stakeholders from the health care community and local businesses to the forums. During the meetings, the section managers gave presentations to help explain the context of the issues on the table and participated as subject matter experts.
Health department staff also served as table facilitators and note takers at the four meetings. Their participation broadened departmental awareness and understanding of the practice at PHSKC. Community stakeholders and Public Health’s partners in the healthcare sector were actively involved in the public engagement project throughout the entire process. First of all, the project’s steering committee was formed by representatives from medical service providers, community based organizations, emergency management, and the Washington State Department of Health. The steering committee met three times before the public meetings, and once after the meetings. The steering committee was essential in carving out the four main research questions for the meetings, as well as ensuring a diverse recruitment for both the stakeholder meetings and public meetings. Representatives from the community-based organizations (CBOs) on the steering committee played an additional role in the meeting planning and recruitment. CBOs were hired to recruit meeting participants and also reviewed meeting materials for literacy levels and translation quality. One community partner that advocates for the Latino community gave PHSKC a room in one of their buildings to host the Spanish-speaking meeting.
Costs and ExpendituresPublic Health – Seattle & King County (PHSKC) convened a steering committee consisting of disaster medicine experts, health care providers, community advocates, and emergency management leaders to determine the projects’ goals, objectives, and guiding questions to pose to the public. Project staff, working with consultants, designed a meeting agenda, selected appropriate methods, and developed meeting materials. Interviews with disaster medicine experts, healthcare providers, community advocates, and members of the public helped to inform the meeting design. Partnerships were formed with community-based organizations to assist with participant recruitment and to advise on meeting design. Additional recruitment was conducted by project staff. The project culminated in four, eight-hour public meetings. Two meetings in English were attended by about 50 participants from the general public each. One meeting was conducted in Spanish and was attended by 17 Latino participants. One meeting was held to solicit input from stakeholders from sectors with a particular stake in crisis standards of care and was attended by 30 representatives from a wide-range of representatives from the healthcare sector, community organizations, emergency management, and other agencies. Data collected from the meetings was analyzed and written into a final report. Findings were disseminated through the steering committee and participants and presented at state and national meetings. The success of the public engagement project was made possible by a significant investment of staff time and resources.
The total cost of the meetings held in King County was $167,000. This figure includes staffing, translation & interpretation, participant incentives, and room rentals. [This figure does not include the cost of the outside consultants that helped guide the meeting design process and acted as lead facilitators at the meetings. The consultants were contracted directly by the Centers for Disease Control and Prevention (CDC)]. A more complete cost breakdown follows: 1. Personnel Salary and Benefits, including project staff, interpreters, meeting note takers, and meeting facilitators: 81, 362 (48.7 %) a. Project Staff, and Support Staff Salary: 50,593 (70% of Personnel Salary and Benefits) b. Meeting Staff Salary: 30,769 (30% of Personnel Salary and Benefits) 2. Room Rental: $2,600 (1.5%) 3. Participant Incentives: $14,700 (8.8%) 4. Contracts with community-based organizations for recruitment: $3,500 (2.1%) 5. Translation and interpretation (Spanish and ASL): $19,200 (11.5%) 6. Catering: $6,600 (4%) 7. Meeting flyer design: 7,800 (4.7%) 8. Misc. (Office supplies, postage): $2,625 (1.6%) Total: $167,000 The project was supported by a grant from the CDC for public engagement for pandemic influenza. The CDC also contracted with a consultant group to assist PHSKC with the meeting design. Mediators from the consultant group acted as a lead facilitator at the stakeholder and public meetings.
ImplementationTasks are separated by objectives. Each objective shared the common goal for the meetings:
1. Obtain feedback and recommendations from a diverse range of community members and stakeholders regarding prioritization of medical services during a severe pandemic, and how those services will be allocated. • Convene Steering Committee: introduce project design and objectives; discuss desired outcomes, explain roles, and approve charter • Definition of roles with ICMA/Meridian (contractors), University of Nebraska (evaluator), CDC (funder) • Literature review and discussion • Steering Committee advise on content and key questions to address in community engagement meetings • Attend national meeting on public engagement • Scout locations for community engagement meetings • Develop key informant interview guide • Key informant interviews with CBO staff, healthcare providers, PHSKC staff • Steering Committee meeting : approve issues for public deliberation and scenarios used in public engagement meetings • Analysis of key informant interview data • Development and testing of Q-sort instrument • Development of pandemic flu education and presentation materials • Development of community engagement meeting format (with ICMA/Meridian) • Reserve meeting spaces • Development of community engagement meeting format and materials (with ICMA/Meridian) • Recruitment of participants • Graphic design of advertising and materials • CBO staff review of translations • Train bilingual health educators, CBOs, facilitators, and note takers for roles in preparatory workshops and/or community engagement meetings • Send reminders to all recruited participants • Steering Committee update of progress (via email) • Convene community engagement meetings • Pre and post evaluations, interviews with participants (University of Nebraska) • Steering Committee update of progress • Participant pre-post evaluations
Objective 2. Explicitly define the community and stakeholder values underlying the above recommendations. • Translate participant feedback and recommendations from Spanish speaking groups • Analyze data from Q-sort activity • Analyzing and integrate community feedback and recommendations into a single report
Objective 3: Share the results of the public engagement process with local, regional, and national leaders. • Convene Steering Committee to assess findings and process, discuss how outcomes will be used in policy • Communication with participants to explain how their input was used in decision-making policy
Due to the complex ethical nature of the topics discussed at the public engagement meetings, as well as and other commitments of both project staff and community members, this public engagement process took 12 months. We estimate that if the meeting topic is very specific and pre-determined from the start of the project, and that there are dedicated, full-time staff available to design and run the meetings, that it would be possible to implement a series of public meetings in six months. This would include time to form a steering committee, secure meeting venues, develop and refine meeting materials, recruit participants, and write a final report.
This practice aims to better understand the public’s values and priorities regarding the delivery of medical services and how those services will be allocated during a severe pandemic influenza.Obtain feedback and recommendations from a diverse range of community members and stakeholders regarding prioritization of medical services during a severe pandemic, and how those services will be allocated.Hold four public meetings by the end of June 2009; convene stakeholders and public participants that represent the diversity of interests and needs in the community
Findings were drawn from qualitative data from documentation of plenary and small group discussions, Q-sort data, and the pre- and post surveys at the four meetings. The pre- and post survey was part of an independent evaluation of the project completed by the University of Nebraska Public Policy Center under contract by the CDC. Plenary and small group discussions were documented by note takers at the meetings. Q-sort data was collected at the end of the meeting by the note takers and analyzed by a Q-sort data specialist at PHSKC. Demographic information about participants was collected by the pre- and post-meeting surveys and by registration information.Data for the project was collected at before, during and after each of the four public meetings from documentation of plenary and small group discussions, Q-sort data, and the pre- and post surveys. Note takers documented both small group and plenary discussions. The Q-sort exercise was built into the agenda and results from the exercise were documented by the note takers. An independent evaluation of the project was completed by the University of Nebraska Public Policy Center under contract to the CDC. The University of Nebraska distributed a pre- and post- meeting survey among all participants. In addition to evaluating the public engagement process, the surveys included questions from project staff asking participants to indicate level of priority for specific groups, their support for standardization of altered standards of care, and the importance given to specific groups for medical service prioritization.
Who received data results: • Meeting participants, steering committee • ASTHO, CDC, NACCHO • Institute of Medicine’s Committee on Guidance for Establishing Standards for Care for Use in Disaster Situations • Washington State Joint Conference on Health • Resilient American Communities: Progress in Practice and Policy (Center for Biosecurity of UPMC) Lessons learned from the data: • Participants were in considerable agreement in strongly endorsing an altered decision-making process for the prioritization of scarce, life-sustaining resources. Medical services sh
ould be prioritized to save the greatest number of people, factoring in survivability, even if standards of care must be lowered; first responders and healthcare workers should be prioritized; when all else is equal, children and pregnant women should receive priority. • Key values from the public included equity, concerns about discrimination, maximizing resources, and trust in healthcare professionals and public health.
Public and key stakeholder participants were in considerable agreement in strongly endorsing an altered decision-making process for the prioritization of scarce, life-sustaining resources: medical services should be prioritized to save the greatest number of people, factoring in survivability, even if standards of care must be lowered; first responders and healthcare workers should be prioritized; when all else is equal, children and pregnant women should receive priorityExplicitly define the community and stakeholder values underlying the above recommendations.Complete a final report with the analysis and results of the discussions at the four public meetingsData from objective one was used by the project staff and the consultant group to write and edit the final report.Data for the project was collected at before, during an
There is commitment on both a regional and national level to continue the use of the public engagement process to address complex ethical issues. As a NACCHO Advanced Practice Center, our department has created a toolkit on public engagement for our own use and to help others replicate this kind of project (http://www.vulnerablepopulation.com/knowing/public_engagement/) In addition, we continue to seek additional opportunities and knowledge about public engagement. Top level managers in this department recognize the value of public engagement for policy and planning.
Since this project ended, we have been conducted an additional stakeholder engagement on H1N1 vaccine distribution and are currently planning an additional public engagement on H1N1 response. The preparedness section, communicable disease epidemiology section, and the office of the director have allocated staff and monetary resources to continue this work and have supported involvement by key staff. At the national level, the Institute of Medicine has issued a letter report with guidance for establishing protocols for altered standards of care. The report includes public engagement as a key action step in the process. A conference on Resilient American Communities hosted by the Center for Biosecurity highlighted the role of public engagement for preparedness planning. Beyond emergency preparedness, the new federal administration has issued a Memorandum stating the President’s commitment to “openness in Government.” On of the arms of that system is public participation: “Executive departments and agencies should offer Americans increased opportunities to participate in policymaking and to provide their Government with the benefits of their collective expertise and information.” While holding public engagement meetings require the dedication of staff time and funding in a time of fiscal crisis, public engagement meetings are an effective option for federal and local agencies seeking public input. Instead of being a one-off project that was made possible thanks to a generous grant, the public engagement process has had a lasting impact at PHSKC. The meeting process showed that it was possible to solicit public input on complex ethical issues. Since members of both the communications and preparedness division were involved in the meetings, public engagement stands out as an effective way to discuss issues and come to a consensus that incorporates different opinions and experiences.
PHSKC is planning four public meetings during April of 2010 to garner feedback from the public on their perceptions and understanding of H1N1 vaccine allocation process. Aspects of the public engagement process—namely the small group discussion—were also incorporated in a H1N1 vaccine planning workshop in the fall of 2009. The department is also considering the utility of community engagement in future planning efforts for preparedness issues. As a NACCHO Advanced Practice Center, our department has created a toolkit on public engagement for our own use and to help others replicate this kind of project (http://www.vulnerablepopulation.com/knowing/public_engagement/) We will be able to maintain relationships with community partners through our Vulnerable Populations Action Team and King County Healthcare Coalition that will enable us to sustain their participation in future public engagement efforts.