Engaging the Public in Critical Disaster Planning and Decision Making: Workshop Summary (2013)

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Theresa Wizemann, Megan Reeve, and Bruce Altevogt, Rapporteurs Forum on Medical and Public Health Preparedness for Catastrophic Events Board on Health Sciences Policy 

THE NATIONAL ACADEMIES PRESS • 500 Fifth Street, NW • Washington, DC 20001 NOTICE: The workshop that is the subject of this workshop summary was approved by the Governing Board of the National Research Council, whose members are drawn from the coun- cils of the National Academy of Sciences, the National Academy of Engineering, and the Insti- tute of Medicine. This activity was supported by contracts between the National Academy of Sciences and the American College of Emergency Physicians; American Hospital Association; Association of State and Territorial Health Officials; Centers for Disease Control and Prevention (Contract No. 200-2011-38807, TO #19); Department of Defense (Contract No. HT0011-11-P-0186), Department of Defense, Uniformed Services University of the Health Sciences (Contract No. HT9404-12-1-0022); Department of Health and Human Services’ National Institutes of Health: National Institute of Allergy and Infectious Diseases, National Institute of Environ- mental Sciences, National Library of Medicine (Contract No. HHSN26300007 [Under Base 1#HHSN263201200074I]); Department of Health and Human Services’ Office of the Assistant Secretary for Preparedness and Response (Contract No. HHSO100201000021P); Department of Homeland Security’s Federal Emergency Management Agency (Contract No. HSFE20-13- P-0212); Department of Homeland Security, Office of Health Affairs (Contract No. HSHQDC-13-J-00384 [Under Base 1 # HSHQDC-11-D-00009]); Department of Transporta- tion’s National Highway Traffic Safety Administration (Contract No. DTNH22-10-H-00287); Department of Veterans Affairs (Contract No. 101-G09041); Emergency Nurses Association; Food and Drug Administration (Contract No. HHSF22301027T [Under Base Contract DHHS- 8598]); Infectious Disease Society of America; Martin, Blanck & Associates; Mayo Clinic; Merck Sharp & Dohme Corp. (Contract No. 2391); National Association of Chain Drug Stores; National Association of County and City Health Officials; National Association of Emergency Medical Technicians; Pharmaceutical Research and Manufacturers of America; Target Corporation; Trauma Center Association of America; and United Health Foundation. The views presented in this publication do not necessarily reflect the views of the organiza- tions or agencies that provided support for the activity. International Standard Book Number-13: 978-0-309-28891-0 International Standard Book Number-10: 0-309-28891-6 Additional copies of this workshop summary are available for sale from the National Academies Press, 500 Fifth Street, NW, Keck 360, Washington, DC 20001; (800) 624-6242 or (202) 334- 3313; http://www.nap.edu. For more information about the Institute of Medicine, visit the IOM home page at: www.iom.edu. Copyright 2013 by the National Academy of Sciences. All rights reserved. Printed in the United States of America Cover Image: Harris County Public Health and Environmental Services (2011). HCPHES Pandemic Influenza Projects. Suggested citation: IOM (Institute of Medicine). 2013. Engaging the public in critical disaster planning and decision making: Workshop summary. Washington, DC: The National Academies Press. 



The National Academy of Sciences is a private, nonprofit, self-perpetuating society of distinguished scholars engaged in scientific and engineering research, dedicated to the furtherance of science and technology and to their use for the general welfare. Upon the authority of the charter granted to it by the Congress in 1863, the Academy has a mandate that requires it to advise the federal government on scientific and technical matters. Dr. Ralph J. Cicerone is president of the National Academy of Sciences. The National Academy of Engineering was established in 1964, under the charter of the National Academy of Sciences, as a parallel organization of outstanding engineers. It is autonomous in its administration and in the selection of its members, sharing with the National Academy of Sciences the responsibility for advising the federal government. The National Academy of Engineering also sponsors engineering programs aimed at meeting national needs, encourages education and research, and recognizes the superior achievements of engineers. Dr. C. D. Mote, Jr., is president of the National Academy of Engineering. The Institute of Medicine was established in 1970 by the National Academy of Sciences to secure the services of eminent members of appropriate professions in the examination of policy matters pertaining to the health of the public. The Institute acts under the re- sponsibility given to the National Academy of Sciences by its congressional charter to be an adviser to the federal government and, upon its own initiative, to identify issues of medical care, research, and education. Dr. Harvey V. Fineberg is president of the Institute of Medicine. The National Research Council was organized by the National Academy of Sciences in 1916 to associate the broad community of science and technology with the Academy’s purposes of furthering knowledge and advising the federal government. Functioning in accordance with general policies determined by the Academy, the Council has become the principal operating agency of both the National Academy of Sciences and the Nation- al Academy of Engineering in providing services to the government, the public, and the scientific and engineering communities. The Council is administered jointly by both Academies and the Institute of Medicine. Dr. Ralph J. Cicerone and Dr. C. D. Mote, Jr., are chair and vice chair, respectively, of the National Research Council. www.national-academies.org 

WORKSHOP PLANNING COMMITTEE1 MEREDITH LI-VOLLMER, Seattle and King County Public Health, Seattle, WA LINDA SCOTT, Healthcare Preparedness Program, Lansing, MI UMAIR SHAH, Division of Disease Control and Clinical Prevention, Harris County Public Health and Environmental Services, Houston, TX IOM Staff BRUCE M. ALTEVOGT, Project Director MEGAN REEVE, Associate Program Officer ALEX REPACE, Senior Program Assistant 1 Institute of Medicine planning committees are solely responsible for organizing the workshop, identifying topics, and choosing speakers. The responsibility for the published workshop summary rests with the workshop rapporteurs and the institution. v 



FORUM ON MEDICAL AND PUBLIC HEALTH PREPAREDNESS FOR CATASTROPHIC EVENTS1 ROBERT P. KADLEC (Co-Chair), RPK Consulting, LLC, Alexandria, VA LYNNE R. KIDDER (Co-Chair), Consultant, Boulder, CO ALEX J. ADAMS, National Association of Chain Drug Stores, Alexandria, VA ROY L. ALSON, American College of Emergency Physicians, Winston-Salem, NC WYNDOLYN BELL, UnitedHealthcare, Atlanta, GA DAVID BIBO, The White House, Washington, DC KATHRYN BRINSFIELD, Office of Health Affairs, Department of Homeland Security, Washington, DC CAPT. D. W. CHEN, Office of the Assistant Secretary of Defense for Health Affairs, Department of Defense, Washington, DC SUSAN COOPER, Regional Medical Center, Memphis, TN BROOKE COURTNEY, Office of Counterterrorism and Emerging Threats, U.S. Food and Drug Administration, Washington, DC BRUCE EVANS, National Association of Emergency Medical Technicians, Upper Pine River Fire Protection District, Bayfield, CO JULIE L. GERBERDING, Merck Vaccines, Merck & Co., Inc., West Point, PA LEWIS R. GOLDFRANK, New York University School of Medicine, New York DAN HANFLING, INOVA Health System, Falls Church, VA JACK HERRMANN, National Association of County and City Health Officials, Washington, DC JAMES J. JAMES, American Medical Association, Chicago, IL PAUL E. JARRIS, Association of State and Territorial Health Officials, Arlington, VA LISA G. KAPLOWITZ, Office of the Assistant Secretary for Preparedness and Response, Department of Health and Human Services, Washington, DC ALI S. KHAN, Centers for Disease Control and Prevention, Atlanta, GA 1 Institute of Medicine forums and roundtables do not issue, review, or approve indi- vidual documents. The responsibility for the published workshop summary rests with the workshop rapporteurs and the institution. vii 

MICHAEL G. KURILLA, National Institute of Allergy and Infectious Diseases, Washington, DC JAYNE LUX, National Business Group on Health, Washington, DC LINDA MACINTYRE, American Red Cross, San Rafael, CA SUZET MCKINNEY, Chicago Department of Public Health, IL NICOLE MCKOIN, Target Corporation, Minneapolis, MN MARGARET M. MCMAHON, Emergency Nurses Association, Williamstown, NJ AUBREY K. MILLER, National Institute of Environmental Health Sciences, Bethesda, MD MATTHEW MINSON, Texas A&M University, College Station ERIN MULLEN, Pharmaceutical Research and Manufacturers of America, Washington, DC JOHN OSBORN, Mayo Clinic, Rochester, MN ANDREW T. PAVIA, Infectious Disease Society of America, Salt Lake City, UT STEVEN J. PHILLIPS, National Library of Medicine, Bethesda, MD LEWIS J. RADONOVICH, Department of Veterans Affairs, Washington, DC KENNETH SCHOR, Uniformed Services University of the Health Sciences, Bethesda, MD ROSLYNE SCHULMAN, American Hospital Association, Washington, DC RICHARD SERINO, Federal Emergency Management Agency, Department of Homeland Security, Washington, DC ERIC S. TONER, Center for Biosecurity of the University of Pittsburgh Medical Center, Baltimore, MD MARGARET VANAMRINGE, The Joint Commission, Washington, DC CRAIG VANDERWAGEN, Martin Blanck & Associates, Alexandria, VA JENNIFER WARD, Trauma Center Association of America, Las Cruces, NM JOHN WIESMAN, Washington State Department of Health, Tumwater, WA GAMUNU WIJETUNGE, National Highway Traffic Safety Administration, Washington, DC viii 

IOM Staff BRUCE M. ALTEVOGT, Forum Director MEGAN REEVE, Associate Program Officer KATE KELLEY, Research Associate ALEX REPACE, Senior Program Assistant ANDREW POPE, Director, Board on Health Sciences Policy ix 



Reviewers This workshop summary has been reviewed in draft form by individ- uals chosen for their diverse perspectives and technical expertise, in ac- cordance with procedures approved by the National Research Council’s Report Review Committee. The purpose of this independent review is to provide candid and critical comments that will assist the institution in making its published workshop summary as sound as possible and to en- sure that the workshop summary meets institutional standards for objec- tivity, evidence, and responsiveness to the study charge. The review comments and draft manuscript remain confidential to protect the integri- ty of the process. We wish to thank the following individuals for their review of this workshop summary: SUSAN COOPER, Regional Medical Center at Memphis KRISTINE M. GEBBIE, Flinders University of South Australia DEBRA KREISBERG, University of Colorado STEVEN A. MEESE, Ohio Department of Health Although the reviewers listed above have provided many construc- tive comments and suggestions, they did not see the final draft of the workshop summary before its release. The review of this workshop summary was overseen by HERMINIA PALACIO, Robert Wood Johnson Foundation. Appointed by the Institute of Medicine, she was responsible for making certain that an independent examination of this workshop summary was carried out in accordance with institutional pro- cedures and that all review comments were carefully considered. Re- sponsibility for the final content of this workshop summary rests entirely with the rapporteurs and the institution. xi 



Contents ACRONYMS xvii INTRODUCTION 1 About This Summary, 2 FRAMING PUBLIC ENGAGEMENT 3 Defining Public Engagement, 3 Expanding Practical Experience, 5 THEORY TO PRACTICE: PLANNING AND IMPLEMENTING PUBLIC ENGAGEMENT ACTIVITIES 5 Seattle and King County, Washington, 6 Harris County, Texas, 12 State of Michigan, 17 Providing Alternative Strategies for Increasing Access to Antiviral Medications and Treatment Advice, 19 CHALLENGES AND LESSONS LEARNED 22 Regulatory Considerations: Public Engagement and the Common Rule, 22 Leadership Buy-In, 24 The Value of Outside Expertise and Sharing Best Practices, 25 Recruitment Strategies, 26 PUBLIC ENGAGEMENT SAMPLE EXERCISES 28 Community Conversation Simulation, 28 Q-Sort Simulation, 35 FINAL REMARKS 39 xiii 

xiv CONTENTS APPENDIXES A References 41 B Statement of Task 43 C Workshop Agenda 45 D Biographical Sketches of Speakers and Panelists 49 

Boxes, Figures, and Tables BOXES 1 Q-Sort Methodology, 9 2 Major Structural Elements of Each Public Engagement Workshop, 20 3 Sample Introductory Exercise to Establish Baseline Opinions (Abbreviated), 31 4 Deadly Virus Scenario, 33 5 Pandemic Influenza Scenario, 35 FIGURES 1 Spectrum of public engagement, 7 2 Q-sort board for ranking opinion statements printed on cards, 36 3 Example of a Q-sort board completed during the simulated public engagement exercise at the workshop, 38 TABLES 1 Methods for Learning About the Meeting, 14 2 Race/Ethnicity for Harris County Adults, Citizens, and Stakeholders, 15 3 Income for Harris County Adults, Citizens, and Stakeholders, 16 4 Sample Agenda for Interactive Public Engagement Exercise, 29 xv 



Acronyms ARS audience response system CDC Centers for Disease Control and Prevention CSC crisis standards of care EMS emergency medical services HCPHES Harris County Public Health and Environmental Services IOM Institute of Medicine IRB institutional review board NACCHO National Association of County and City Health Officials NTL nurse triage line VPAT Vulnerable Populations Action Team xvii