Monica Schoch-Spana

Trust The Fragile Foundation of Contemporary Biomedical Research

It is widely assumed that informing prospective subjects about the risks and possible benefits of research not only protects their rights as autonomous decisionmakers, but also empowers them to protect their own interests. Yet interviews with patient-subjects conducted under the auspices of the Advisory Committee on Human Radiation Experiments suggest this is not always the case. Patient-subjects often trust their physician to guide them through decisions on research participation. Clinicians, investigators, and IRBs must assure that such trust is not misplaced.

Bioterrorism and the People: How to Vaccinate a City against Panic

Bioterrorism policy discussions and response planning efforts have tended to discount the capacity of the public to participate in the response to an act of bioterrorism, or they have assumed that local populations would impede an effective response. Fears of mass panic and social disorder underlie this bias. Although it is not known how the population will react to an unprecedented act of bioterrorism, experience with natural and technological disasters and disease outbreaks indicates a pattern of generally effective and adaptive collective action. Failure to involve the public as a key partner in the medical and public-health response could hamper effective management of an epidemic and increase the likelihood of social disruption. Ultimately, actions taken by nonprofessional individuals and groups could have the greatest influence on the outcome of a bioterrorism event. Five guidelines for integrating the public into bioterrorism response planning are proposed: (1) treat the public as a capable ally in the response to an epidemic, (2) enlist civic organizations in practical public health activities, (3) anticipate the need for home-based patient care and infection control, (4) invest in public outreach and communication strategies, and (5) ensure that planning reflects the values and priorities of affected populations.

Implications of Pandemic Influenza for Bioterrorism Response

The 1918-1919 influenza pandemic (Spanish flu) had catastrophic effects upon urban populations in the United States. Large numbers of frightened, critically ill people overwhelmed health care providers. Mortuaries and cemeteries were severely strained by rapid accumulation of corpses of flu victims. Understanding of the outbreaks extent and effectiveness of containment measures was obscured by the swiftness of the disease and an inadequate health reporting system. Epidemic controls such as closing public gathering places elicited both community support and resistance, and fear of contagion incited social and ethnic tensions. Review of this infamous outbreak is intended to advance discussions among health professionals and policymakers about an effective medical and public health response to bioterrorism, an infectious disease crisis of increasing likelihood. Elements of an adequate response include building capacity to care for mass casualties, providing emergency burials that respect social mores, properly characterizing the outbreak, earning public confidence in epidemic containment measures, protecting against social discrimination, and fairly allocating health resources.

Community Resilience for Catastrophic Health Events

Where local civic leaders, citizens, and families are educated regarding threats and are empowered to mitigate their own risk, where they are practiced in responding to events, where they have social networks to fall back upon, and where they have familiarity with local public health and medical systems, there will be community resilience that will significantly attenuate the requirement for additional assistance.

Community Resilience Roundtable on the Implementation of Homeland Security Presidential Directive 21 (HSPD-21)

269 ON APRIL 23, 2008, THE CENTER for Biosecurity of the University of Pittsburgh Medical Center (UPMC) convened an invitational meeting to discuss community resilience for catastrophic health events and to help inform implementation planning for Homeland Security Presidential Directive 21 (HSPD-21). Released in October of 2007, HSPD-21 identified community resilience as one of the “four most critical components of public health and medical preparedness” alongside biosurveillance, countermeasure distribution, and mass casualty care, and the directive also asserted “the important roles of individuals, families, and communities” in managing public health emergencies.1 Meeting attendees (listed in the sidebar) included officials who authored HSPD-21 and those charged with its execution, grassroots leaders who have prioritized disaster management in their hometowns and among vulnerable populations, public health and emergency management practitioners, scholars of disasters and resilience, and staff to members of Congress with jurisdiction over homeland security and public health matters. Individual comments made during the event were not for attribution. The day’s agenda was organized into 3 structured discussions: roundtable participants considered which definition(s) of community resilience best advanced the policy agenda, they reviewed prior public participation programs for disasters for relevant lessons, and they made recommendations for federal program and budget priorities in keeping with the value placed on resilience by the presidential directive. The organization of this report reflects the 3-part agenda. Opening each conversation was a presentation from the Center for Biosecurity and invited speakers, accompanied by the results of a brief survey circulated in advance of the meeting to spur discussion. Among the issues polled were attendees’ own concepts of community resilience, concrete techniques for building resilience, and the role of the federal government in helping state and local authorities promote resilient communities. A majority of participants (n 20) completed the survey. The following report is an overview of prepared remarks, pre-event survey findings, and the major themes that arose in the roundtable discussions. We first provide some brief background knowledge on HSPD-21.

The People's Role in U.S. National Health Security: Past, Present, and Future

Over the past decade, assumptions have been made and unmade about what officials can expect of average people confronting a bioterrorist attack or other major health incident. The reframing of the public in national discourse and doctrine from a panic-stricken mob to a band of hearty survivors is a positive development and more realistic in terms of the empirical record. So, too, is the realization that citizen contributions to national health security encompass not only individual preparedness and volunteerism but also mutual aid and collective deliberation of the tough choices posed by health disasters. In projecting what needs to occur over the next 10 years in biosecurity, 2 priority challenges emerge: retaining the lesson that a public prone to panic, social disorder, and civil unrest is a myth, and building an infrastructure to bolster the publics full contributions to health emergency management.

Doing good by playing well with others: exploring local collaboration for emergency preparedness and response

Increasingly frequent and costly disasters in the US have prompted the need for greater collaboration at the local level among healthcare facilities, public health agencies, emergency medical services, and emergency management agencies. We conducted a multiphase, mixed-method, qualitative study to uncover the extent and quality of existing collaborations, identify what factors impede or facilitate the integration of the preparedness community, and propose measures to strengthen collaboration. Our study involved a comprehensive literature review, 55 semistructured key-informant interviews, and a working group meeting. Using thematic analysis, we identified 6 key findings that will inform the development of tools to help coalitions better assess and improve their own preparedness community integration.

A Community Checklist for Health Sector Resilience Informed by Hurricane Sandy

This is a checklist of actions for healthcare, public health, nongovernmental organizations, and private entities to use to strengthen the resilience of their communitys health sector to disasters. It is informed by the experience of Hurricane Sandy in New York and New Jersey and analyzed in the context of findings from other recent natural disasters in the United States. The health sector is defined very broadly, including-in addition to hospitals, emergency medical services (EMS), and public health agencies-healthcare providers, outpatient clinics, long-term care facilities, home health providers, behavioral health providers, and correctional health services. It also includes community-based organizations that support these entities and represent patients. We define health sector resilience very broadly, including all factors that preserve public health and healthcare delivery under extreme stress and contribute to the rapid restoration of normal or improved health sector functioning after a disaster. We present the key findings organized into 8 themes. We then describe a conceptual map of health sector resilience that ties these themes together. Lastly, we provide a series of recommended actions for improving health sector resilience at the local level. The recommended actions emphasize those items that individuals who experienced Hurricane Sandy deemed to be most important. The recommendations are presented as a checklist that can be used by a variety of interested parties who have some role to play in disaster preparedness, response, and recovery in their own communities. Following a general checklist are supplemental checklists that apply to specific parts of the larger health sector.

Recommendations on How to Manage Anticipated Communication Dilemmas Involving Medical Countermeasures in an Emergency

National investments to facilitate prompt access to safe and effective medical countermeasures (MCMs) (ie, products used to diagnose, prevent, protect from, or treat conditions associated with chemical, biological, radiological, or nuclear threats, or emerging infectious diseases) have little merit if people are not willing to take a recommended MCM during an emergency or inadvertently misuse or miss out on a recommended MCM during an emergency. Informed by the Expert Working Group on MCM Emergency Communication, the Johns Hopkins Center for Health Security developed recommendations for achieving desired public health outcomes through improved MCM communication based on a review of model practices in risk communication, crisis communication, and public warnings; detailed analysis of recent health crises involving MCMs; and development of a scenario depicting future MCM communication dilemmas. The public’s topics of concern, emotional requirements, capacity for processing information, and health needs will evolve as an emergency unfolds, from a pre-event period of routine conditions, to a crisis state, to a post-event period of reflection. Thus, MCM communication by public health authorities requires a phased approach that spans from building up a reputation as a trusted steward of MCMs between crises to developing recovery-focused messages about applying newly acquired data about MCM safety, efficacy, and accessibility to improve future situations.

Scarce Resource Allocation During Disasters: A Mixed-Method Community Engagement Study

Background During a catastrophe, health‐care providers may face difficult questions regarding who will receive limited life‐saving resources. The ethical principles that should guide decision‐making have been considered by expert panels but have not been well explored with the public or front‐line clinicians. The objective of this study was to characterize the public’s values regarding how scarce mechanical ventilators should be allocated during an influenza pandemic, with the ultimate goal of informing a statewide scare resource allocation framework. Methods Adopting deliberative democracy practices, we conducted 15 half‐day community engagement forums with the general public and health‐related professionals. Small group discussions of six potential guiding ethical principles were led by trained facilitators. The forums consisted exclusively of either members of the general public or health‐related or disaster response professionals and were convened in a variety of meeting places across the state of Maryland. Primary data sources were predeliberation and postdeliberation surveys and the notes from small group deliberations compiled by trained note takers. Results Three hundred twenty‐four individuals participated in 15 forums. Participants indicated a preference for prioritizing short‐term and long‐term survival, but they indicated that these should not be the only factors driving decision‐making during a crisis. Qualitative analysis identified 10 major themes that emerged. Many, but not all, themes were consistent with previously issued recommendations. The most important difference related to withholding vs withdrawing ventilator support. Conclusions The values expressed by the public and front‐line clinicians sometimes diverge from expert guidance in important ways. Awareness of these differences should inform policy making.