Over the past decade, preparedness and response capacities of government agencies, hospitals and clinics, public health agencies, and academic researchers in the United States and abroad have been challenged by a succession of public health emergencies, ranging from radiological threats to pandemics to earthquakes. Through After Action Reports, each of these emergencies has yielded important information and lessons learned that can inform future disaster response and recovery efforts. However, important information that needs to be collected during and immediately following these emergencies is often missed because of barriers and obstacles to gathering such data, such as varying institutional review board (IRB) restrictions in different states, no sustainable funding network for this type of work, uncertainty on who should be involved in research response, and a lack of knowledge around how best to integrate research into response and recovery frameworks. Another challenge, said Aubrey Miller, senior medical adviser at the National Institute of Environmental Health Sciences (NIEHS), is how to enable science faster during a disaster to address the important health questions more quickly. Nicole Lurie, Assistant Secretary for Preparedness and Response, observed that although issues and challenges have been discussed for years in numerous different venues, there is now a groundswell of interest across all sectors in moving beyond discussion
_______________
1The planning committee’s role was limited to planning the workshop. This workshop summary has been prepared by the rapporteurs as a factual summary of what occurred at the workshop. Statements, recommendations, and opinions expressed are those of individual presenters and participants, and are not necessarily endorsed or verified by the Institute of Medicine and should not be construed as reflecting any group consensus.
and taking action. Public health and other local agencies around the country have many ongoing community resilience and preparedness activities, so building disaster research efforts by integrating into already established frameworks could prevent duplication and augment funding support. She encouraged working to operationalize these issues in science preparedness and response and highlighted integrating research framework into existing response frame-works, implementing plans that support research into real-world responses, and building new relationships between research networks and the responding community.
Taking action to enable medical and public health research during disasters was the focus of a workshop held on June 12 and 13, 2014, on the campus of the National Institutes of Health (NIH) in Bethesda, Maryland. It was coordinated and supported jointly by the Institute of Medicine (IOM) Forum on Medical and Public Health Preparedness for Catastrophic Events, NIEHS, the National Library of Medicine (NLM), the U.S. Department of Health and Human Services’ (HHS’s) Office of the Assistant Secretary for Preparedness and Response (ASPR), and the U.S. Centers for Disease Control and Prevention (CDC). Invited speakers and participants from federal, state, and local government, academia, and community and worker organizations came together to discuss how to integrate research into existing response structures; identify critical research needs and priorities; identify obstacles and barriers to research; discuss structures and strategies needed for deployment of a research study; share ideas, innovations, and technologies to support research; and explore data collection tools and data-sharing mechanisms for both rapid and longitudinal research.
Lurie and Miller challenged participants to outline the top action items for improving national and local capabilities to enhance medium to longer-term health research. Specifically, they asked participants to consider: Which individuals would perform research (and what is the role of citizen science)? What logistical support, training, or protocols are needed to collect data in the field? How should the data be managed, and what are the ethical and legal concerns? How should risk communication be facilitated among researchers, health officials, and the community? Who else needs to be involved in the research proposals and data collection (and what is the role of private industry, workers, others)? The objectives for the workshop discussions as outlined by the workshop planning committee are presented in Box 1-1.2
_______________
2The full Statement of Task can be found in Appendix F.
BOX 1-1
Workshop Objectives
The workshop will examine strategies and diversified partnerships to enable methodologically and ethically sound public health and medical research during future emergencies. Specific goals include discussions of
- Ensuring adequate protections for human research participants, including informed consent during emergencies.
- Issues and new efforts in development to enable institutions to use central Institutional Review Boards for public health emergencies.
- Strategies and resources to help support timely research by investigators and research institutions while reducing deployment times and administrative burden.
- Decision-making triggers to activate identified research efforts.
- Important infrastructure gaps and short-term opportunities to advance research responses.
- Effective integration and implementation of research efforts alongside life-saving emergency response activities and platforms (e.g., logistics, communications, access, safety).
- Opportunities and challenges associated with establishing “researcher response” teams.
- Improved involvement and coordination among government, academia, and the community to facilitate needed research infrastructure and timely responses, including use of “citizen science,” into a research response framework.
ORGANIZATION OF THE WORKSHOP AND REPORT
In addition to several overview presentations and case examples, the workshop was organized around focused panel discussions on six key areas identified by the workshop planning committee as relevant to advancing research response capabilities (see Box 1-2).
The following report summarizes the presentations from expert speakers and discussions among workshop participants. Chapter 2 provides a brief background on conducting research during disasters, including several current federal disaster research initiatives and resources. Chapter 3 presents some lessons learned from recent disasters
BOX 1-2
Six Key Topic Areas
- Addressing institutional review board barriers to health research implementation.
- Partnering with the community to enable access and baseline data.
- Improving data collection capabilities and information resources.
- Considerations for rapid and sustained funding mechanisms for research in disasters.
- Improving the role of extramural clinical and academic researchers, centers, and networks.
- Coordinating logistics to execute rapid research in disaster response.
regarding medical and public health research needs and actions. Cases explored include Hurricanes Katrina and Sandy, the Deepwater Horizon oil spill, and the 9/11 terrorist attacks. Chapters 4 through 9 include overviews of the six breakout panel sessions, including the facilitators’ reports on the key issues and opportunities highlighted by participants in each session. Finally, Chapter 10 summarizes the reflections of the response panel and their comments on taking the field of disaster research forward.
OVERVIEW OF TOPICS HIGHLIGHTED DURING PRESENTATIONS AND DISCUSSIONS3
A number of themes emerged across multiple workshop presentations and discussions as participants considered potential opportunities for improving research in disaster response across the six focus areas listed. The themes and opportunities highlighted below (see Box 1-3), as identified by one or more individual participants are, expanded upon below the box as in succeeding chapters.
_______________
3Rapporteurs’ summary of main topics and recurring themes from the presentations, discussions, and summary remarks by the meeting and session chairs. Items on this list should not be construed as reflecting any consensus of the workshop participants or any endorsement by the IOM or the Forum.
BOX 1-3
Themes and Opportunities During Workshop Discussions
- Actionable science, with the ultimate goal of improving outcomes for those impacted by disaster
- Defining the key questions
- Defining the “research responders”
- Rapid and agile funding mechanisms
- Core dataset
- Standardization
- Building day-to-day systems, networks, and trust
- Streamline IRB approval process
- Coordination of research across studies and into the larger emergency management system
- Essential partnerships
- The community
- Public health agencies and the health care sector
- Local academic institutions
- Unions, workers’ organizations, and workers
- Disaster epidemiologists
- Emergency medical services (EMS)
- Pharmaceutical manufacturers and pharmacists
- Funding partners
- Actionable science, with the ultimate goal of improving outcomes for those impacted by disaster. A main theme underpinning all discussions was the need for timely collection of data during disasters to improve science preparedness and medical and public health response efforts (not simply collecting data). Many participants stressed that any research conducted during a disaster should be relevant and meaningful, with the goal of enhancing response and improving human health outcomes.
- Defining the key questions. Honing the actionable medical and public health science theme further, many participants highlighted the benefit to clearly define the questions to be answered by research during a disaster.
- Defining the “research responders.” Having pre-identified networks and rosters of responders with specific types of expertise that can be matched to the disaster needs would aid in
-
creating a more efficient study process. Some participants suggested having a cadre of volunteers and professionals on reserve, similar to the Medical Reserve Corps volunteers, who are trained in the response structure of disasters but also have identified and documented skills that can be used when needed. Technology and increased crowdsourcing opportunities also create the prospect for “citizen scientists” and engaging people at the community level who know baseline information, understand the cultural nuances, and will be invested in the outcomes of the science response.
- Rapid and agile funding mechanisms. Having nimble funding opportunities that can be flexible to situational needs and quick to deploy is an ongoing challenge. Academic institutions and government have difficulty holding onto nondescript funding that may not be used each fiscal year. Some models discussed could serve as potential methods, such as the National Science Foundation’s (NSF’s) RAPID model and the Natural Hazards Center in Colorado. Making the case that disaster research can be directly linked to impact disaster response decisions and community resiliency can also help to include research in more routine disaster funding.
-
Core dataset. Much of the discussion was focused on the challenges of determining the core set of data elements that need to be collected once key questions are identified. Data collection, in particular, has been an ongoing challenge, including the ability to deploy rapidly and immediately begin to collect what was referred to as perishable or ephemeral baseline data.
- Standardization. Participants discussed the need for a standardized, minimum set of data elements that would be sought by anyone collecting data. Participants also discussed the need for common terminology and definitions and the development of standardized data collection and reporting tools. A centralized list (website) of tools and disaster literature was also suggested.
- Building day-to-day systems, networks, and trust. Various participants advocated for building strong health care infrastructure and systems that can provide care to everyone on a day-to-day basis, rather than developing separate systems to be used only in a disaster. This way,
systems that already collect data on a routine basis can be tapped easily for research needs in a disaster. Data collection functions could even be integrated into existing incident command system frameworks to ensure continuity. There was also much emphasis on establishing strong predisaster networks, coalitions, and trust relationships that can be rapidly accessed during a disaster when the need for data arises. Some participants also discussed systemic rostering of people in these networks—assembling lists of experts so that teams can be more easily and rapidly assembled after a disaster.
- Streamline IRB approval process. Participants discussed issues of IRB approval, the value and role of a central or national rapid IRB for use in disasters (e.g., the Public Health Emergency Research Review Board, or PHERRB), and the possibility of preapproval of protocols and methodology to expedite study deployment. With regard to informed consent, several participants raised the issue of therapeutic misconception and highlighted the need to ensure that potential participants fully understand the difference between research and services before participating, especially during a crisis when they are most vulnerable.
- Coordination of research across studies and into the larger emergency management system. Several participants highlighted the advantages of coordination among institutions, IRBs, and the federal entities funding the research. The potential for “survey fatigue” among research participants was noted, given the large number of research projects being done concurrently in a disaster. There were also calls for coordination of research with the incident command structure (ICS) and defining where research fits within the emergency management structure.
- Essential partnerships. Another recurring discussion point was that no single researcher, team, discipline, agency, or institution alone can address these issues. Leveraging the strengths of many different partners is necessary, including funding partners to make this research truly multidisciplinary. A few participants pointed out, however, that academic institutions are not funded for relationship building and highlighted challenges of establishing and funding a sustainable ready reserve base. Essential partners listed by participants included
- The community, as both participants in research and partners in collecting data. Community members and leaders have many resources that can be brought to bear, including their networks and their experience with, for example, advocacy, community meetings, and mobilizations. The community has a wealth of knowledge regarding how they, as a community, can best be engaged and what best serves their needs in their environment. Several participants supported the idea of having an ongoing relationship of trust with the community, sharing findings and helping them to understand the value of research. Some participants also discussed engaging the community in data collection efforts and fostering “citizen science.”
- Public health agencies and the health care sector can both inform key research questions and help to apply the information gleaned in a practical environment while also acting as data sources for various types of studies. Additionally, to support the suggestions to make better connections with the community, public health and health care can encourage access to affected persons/populations to capture essential information to support research efforts during response.
- Local academic institutions, who have a vested interest in the community and who can help to provide baseline data, conduct studies, facilitate stakeholder meetings, provide surge capacity (e.g., staff, space for shelters), assess training needs, provide technical assistance, and collaborate on publications.
- Unions, workers’ organizations, and workers, including employees of impacted companies/facilities as well as a broad range of emergency responders; public health, medical and social workers; skilled support workers; workers involved in the cleanup; construction labor; and others.
- Disaster epidemiologists, as providers of baseline data. As a partner discipline, disaster epidemiology can offer rapid needs assessments, shelter surveillance, morbidity and mortality surveillance, responder health and safety surveillance, descriptive and analytic studies, evaluation and impact studies, and registries.
- Emergency medical services, as a valuable source of data during and after disasters. The National EMS Information
System (NEMSIS) could potentially provide baseline information, the capacity to conduct longitudinal health assessments for high-risk groups, and deidentified data.
- Pharmaceutical manufacturers and pharmacists, who have a lot of information about their products that may not be in the public domain. They could, for example, assist with the development of postevent study protocols involving their products, contribute unique analytic capabilities, have a role in the conduct and analysis of studies, and develop patient communications.
- Funding partners, including federal funders, health foundations, corporate donors, and others. It was noted that private foundations generally move much faster than the typical government agency and have a strong community-orientation focus. Participants discussed that funding is needed not only for the study of the clinical and technological aspects of response, but also for the study of organizational management (e.g., coordination, communication, situational assessment, and data sharing). Funding is also needed before events to develop infrastructure and instruments and to be ready to arrive at the site as soon as possible and characterize the exposures by whatever means are appropriate before ephemeral data dissipate.
This page intentionally left blank.
