In this final chapter, experts offer remarks about the issues and opportunities raised throughout the summary, including commenting on some of the challenges highlighted at the end of each chapter. They considered strategies for improved inclusion and integration of all stakeholders to support the timely identification of health research priorities, collection of data to understand health impacts, efficacy of responses, and risk factors to strengthen resiliency and future preparedness.
Reflecting on the workshop, Paul Biddinger, medical director for emergency preparedness at Massachusetts General Hospital and Partners Healthcare, suggested that there is a need to be bold but restrained. Often, he said, it is hard to have concrete items to follow up on after such a broad set of ideas and questions has been put forth in the workshop discussions. As discussed throughout the workshop, it is incumbent on the research community to come up with the key questions that need to be answered and an agreed-to core set of data elements needed to answer those questions. These elements must be captured in an event by everyone, and he suggested that the core set of data elements could be built into the ICS forms, CMS reporting requirements, Joint Commission accreditation requirements, and the like. The worse the chaos gets, the more you lose your data, he said. As noted by others, trying to recreate the data after the event is not nearly the same thing.
Marcia McNutt, the editor in chief of Science, emphasized the need to keep the end goal in mind when defining the questions, which is using science to ultimately reduce disaster risk and improve disaster mitigation. It is important to understand what happened during the event, why it led to human impact, and how to interrupt the cascade of consequences that led to negative impacts on humans. The most important disaster is often the one no one hears about because it was prevented. An example, McNutt said, is the 2002 magnitude 7.9 earthquake on the Denali fault that ruptured right beneath the Trans-Alaska pipeline, and not a drop of oil was spilled. She suggested that disaster was averted as a result of decades of work by seismologists to understand the ground motion from earthquakes, which led to the earthquake-proof design of the pipeline (S-curves on sliders to allow for movement). She acknowledged, however, the challenges of funding for research to prevent disasters. The interest in such research is greatest immediately after a disaster, but it can quickly wane, and true, validated answers can take time.
The most important disaster is the one that never made the headline because you prevented it from happening, because of all the science you did and all the mitigation you did, and so no one ever knew about it.
Sally Phillips, acting principal deputy assistant secretary in the Office of Health Affairs at the U.S. Department of Homeland Security, also reiterated the need for a set of core data elements that should be collected and the need for a central repository for the data. We don’t need everybody asking the same questions over and over again, she said.
McNutt highlighted the need to institutionalize networks with a diversity of partners and partnerships. One way to achieve this, she suggested, is to integrate networks into day-to-day operations, rather than having them for use in emergencies only. Activities such as gathering routine baseline data in collaboration with partners set up networks that can be tapped in emergencies. Other ways to build networks are through exercising scenarios, risk communication activities, and educational events. Biddinger suggested that a national program modeled on the Medical Reserve Corps program could help to address the manpower shortages in a
disaster. A “research reserve corps” would be volunteers who are trained and ready to help collect data during a disaster in a manner that would not detract from the response.
Sally Phillips concurred with comments made during the workshop that anyone can be trained to collect data and do it well, as long as there are quality assurances in place. How can we empower citizen researchers in a disaster to start gathering baseline data (being careful not to burden those who are overwhelmed with the event)? She suggested, for example, that people in shelters who cannot yet return home are often extremely bored and might make good citizen scientists. Engaging the citizenry not only in gathering information, but in taking action on the results, improves the resilience and the responsiveness of the community.
Phillips also reminded participants of the discussions around trust and the need to ensure that the data collection process protects the privacy of the people and the community, especially during a crisis when they are most vulnerable. Trust is central, Irwin Redlener reiterated, and it must not be squandered by asking questions that are not going to be meaningful or by not engaging to use the findings to influence public policy.
Biddinger also raised the issue of health systems research and noted that there are certain elements of research about systems that can only be captured during a disaster. The response in Boston to the Boston Marathon bombings had a lot to do with systems, he said, and there is no question that a lot of what was done should be credited to research. Boston modified its disaster plans years ago after considering the data from responses to mass casualty incidents around the world.
Irwin Redlener of Columbia University raised concerns about the ability of research to influence policy, citing a spate of recent disasters that could have been avoided, lessened, or responded to more effectively if lessons from prior disasters had been heeded or scientific knowledge about the phenomena had been taken into account and changes or plans made.
He recommended that any proposal to any agency that deals with preparedness should have a justification for why the research program will prepare for, prevent, or mitigate disasters and save lives. The ultimate goal is to substantially reduce the risk of people dying in disasters and improve the chances of a rapid, efficient recovery from disasters. Everything has to
feed in to that agenda, he said. He called for a strategic national plan that outlines where research fits in a purposeful way.
Redlener listed three barriers to full preparedness: federalism (which prohibits the federal government from requiring particular preparedness actions unless it is a national emergency); bureaucracy and dysfunctional relationships between and among federal, state, and city agencies; and gaps between science and policy and between the private sector and government.
To address the gap between science and policy, Redlener called for a new level of activism by scientists for dealing with the big issues. Preparedness plans made in the absence of key information are insufficient, and scientists must step up and be heard by policy makers, especially with regard to issues of scale. He mentioned as an example the efforts by New York State on pandemic influenza preparedness, and opined that the commitment was insufficient by a factor of 10 based on the actual needs of hospitals. Research needs to extend into what the consequences of the findings may be, or how concerns can be fixed. Somebody has to do it, and right now nobody is, he said.
I don’t think there should be any federal funding for any kind of [disaster] research that doesn’t have a goal of saving lives and guiding policy.
Engaging with Policy Makers
Sally Phillips concurred with the need to be politically active, but noted that researchers are often reluctant to engage in the political environment. Policy makers will incorporate research into policy if it is conveyed to them in a way they can understand it, on an ongoing basis, she said. They will not read it in journals. She suggested that sharing information can help to mobilize the political structure to the scientist’s favor. For example, funding usually follows disaster events, but it rarely includes research money (supplemental funding following Hurricane Sandy being a recent exception, with some research funding included in the appropriations). She suggested that if the political structure is made aware of the research being conducted during disasters, and the ongoing, long-term data being collected, there could be more research funding targeted in supplemental appropriations related to these disasters. Researchers cannot be shy about sharing data and cannot wait to share with policy makers until
it is perfect and ready for publication. Biddinger added that it is also important to publicize when research leads to improved outcomes in subsequent disaster response. Researchers need to do a better job collectively of sharing research successes with concrete outcomes, not just results, he said.
Policy makers will incorporate your research into their policy, if you bother to tell it to them in a way they can understand it, on an ongoing basis.
Another challenge, McNutt added, is that when scientists do present their findings, policy makers who either do not want to spend the money or do not want to take the action can always find a scientist who will dispute or offer a different opinion on the findings. She noted that climate change science is a prime example of this.
We do have a consensus that we need [disaster] research, that we can focus the research on enhancing both the response to the disaster and potentially affecting the individuals affected by that very disaster.
Cairns opined that there is a consensus that disaster research is needed, and that the research can be focused on enhancing both the response to a disaster and impacting outcomes for the individuals affected by that disaster. Scientists need to come forward with data and sound evidence that can impact this mission in the face of programmatic funding and regulatory challenges.
Herrmann noted that NACCHO hosts an annual preparedness summit, bringing together more than 2,000 local, state, and federal public health care professionals, and more recent summits have included a research forum to create connections between the research community and the practice community. Herrmann shared some of the concerns raised by both NACCHO constituents and several workshop participants about public health and researchers working together. Public health departments need to understand the value and benefit of the research to them, their agencies, and their public’s health. Researchers should also ask them directly what would incentivize them to participate in this research. Public health departments need to be included in the planning process from the beginning. There is also a need to address the perceived burdens associated with the health departments’ participation in disaster research and provide assurance that they will still be able to perform their primary function and responsibility during the response and recovery period (protecting the health and welfare
of their communities). Budget cuts over the past few years have severely impacted the services that public health departments can offer to their communities, and researchers need to recognize the limitations and the burdens that public health departments are under, especially during public health emergencies. Public health practitioners and researchers speak different languages, Herrmann said, and can be intimidated by one another. Public health departments will be more apt to embrace research if there is an open environment that allows for all levels of questions as they try to understand what researchers want of them and why. It is also important that public health departments hear about their peers who have been successful in participating in research collaborations.
Local health departments are a community and culture in and of themselves, Herrmann concluded. Researchers need to appreciate what motivates that culture and what the departments concerns and issues are, and find ways to incentivize and show the value of collaborative research relationships.
Sally Phillips highlighted several challenges to disaster research that are inherent within the academic research system. That system, she said, is built on competition and rewards. The underlying premise of research in academic environments is achieving tenure, and publications are the way that we disseminate what we have done. Researchers typically take data out of communities and out of situations for the purposes of generating studies and results, but there is not a lot of putting anything back in to those communities or situations, she said. Disaster research is dirty and imperfect, it does not fit well into any one box as many pure science or clinical research projects do, and researchers have concerns about its value and potential publishing ability. Universities have tremendous resources to leverage, and she suggested that disasters provide an opportunity for students to participate in the research environment and learn about engagement with a community. She stressed that this does not mean sending students into harm’s way, but rather, having them participate at a secondary level by analyzing data and feeding it back to the situation, thereby getting a real sense of the struggles of that community. This will provide these next-generation clinicians, researchers, and scientists with a tremendous perspective that most do not have, she said.
McNutt suggested that academic journals could help advance research in disasters by helping to identify appropriate experts as needed from their extensive databases of potential reviewers on an extensive array of topics. She also alerted participants to the forthcoming launch of a new American Association for the Advancement of Science open-access journal, Science Advances that aims to encourage interdisciplinary work and remove some of the barriers to publication.1
Some of the panelists stressed the need to “think big” to address these complex problems and to translate research into action. Research in a disaster should be as relevant as possible to the questions that matter, Redlener said, and should be done with humility because science is not perfect, it is iterative, and there are numerous sensitivities related to data collection after disasters in certain populations. Sally Phillips reiterated an earlier statement that no single researcher, team, or discipline can address these issues alone. It is necessary to leverage the strengths of different partners, including funding partners, in order to make this feasible and accomplishable for researchers, responders, and communities across the country. Making the connection between research and outcomes is essential, panelists said. As Biddinger stated, it can help to earn the trust of communities where research is being conducted, inform future disaster planning, and secure funding, which together could complete an important part of the puzzle in creating a robust science response and a resilient nation.
1See http://news.sciencemag.org/people-events/2014/02/aaas-launches-open-access-journal (accessed December 18, 2014).
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