Enabling Rapid and Sustainable Public Health Research During Disasters Summary of a Joint Workshop by the Institute of Medicine and the U.S. Department of Health and Human Services (2015) / Chapter Skim
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6 Improving Data Collection Capabilities and Information Resources
6 Improving Data Collection Capabilities and Information Resources
Pages 63-76
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From page 63... ...
To address pieces of this, data collection could often be legitimately framed as disaster epidemiology, with an expected impact on public health practice, which may remove some of the administrative challenges often encountered. In this section, participants explored new data collection tools, strategies, and infrastructure needs across many sectors to enable effective and accessible data sharing and field implementation.
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From page 64... ...
The repository, housed on the NLM Disaster Research Responder website, is intended to be an easy-to-use, interactive site where researchers can find tools to support research response. The searchable repository will also include metadata about the tools (e.g., ease of use, duration, number of questions, languages the tool is available in, history of use, points of contact for the tool, references, etc.)
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From page 65... ...
Heumann suggested that disaster epidemiologists should be research partners and providers of some of the baseline data that disaster researchers seek. Aligning public health practice and research will be important as disaster epidemiology becomes more common, and stronger partnerships can help both medical and public health responders and researchers achieve their goals.
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From page 66... ...
There is often an absence of baseline information, denominator data are difficult to obtain, electronic health data might be limited and medical or death records might not indicate disaster-relatedness. Infrastructure damage (e.g., power, phone, and Internet outages)
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From page 67... ...
. Heumann highlighted three specific examples of disaster epidemiology resources, all of which were developed by CDC and could be mobilized quickly after a disaster if needed.
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From page 68... ...
The Assessment of Chemical Exposures program, developed by the Agency for Toxic Substances and Disease Registry, provides training in disaster epidemiological investigation of a chemical incident, technical assistance, and a toolkit of resources to guide local authorities in response. The toolkit includes standardized materials, such as modifiable survey forms, consent forms, a medical chart abstraction form, an interviewer training manual, and databases.4 Disaster epidemiology is now widely practiced, Heumann said, and most local and state health departments carry out some form of disaster epidemiology.
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From page 69... ...
provided a brief overview of the federal role in supporting the development of EMS and described NEMSIS and its role in supporting preparedness planning and research. NEMSIS NEMSIS is a system for standardizing EMS patient care data collection across the United States by promoting the use of standard definitions, data formats, and data reporting, Wijetunge explained.
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From page 70... ...
She noted that the study also shows some of the limitations of the current infrastructure of NEMSIS for providing information on disasters. Not all patients involved in a particular MCI may be documented, because some state and local EMS systems have protocols that permit EMS personnel to reduce the time devoted to patient documentation and tracking during larger, more complex incidents.
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From page 71... ...
is the lead CDC center in responses to natural, chemical, and radiological disasters. The Office of Public Health Preparedness and Response provides overall coordination and support of CDC activities and funds state and local capacity building efforts, and the Center for Surveillance, Epidemiology, and Laboratory Services houses the BioSense public health surveillance system.6 The Health Studies Branch of NCEH focuses on building public health capacity at the state and local levels, providing assistance and emergency response during events, and conducting research on risk and protective factors, said Lauren Lewis, chief of the Health Studies Branch at NCEH.
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From page 72... ...
Lewis concurred with some of the challenges of disaster research mentioned by others, including issues related to the IRBs, OMB, and funding for response versus research. NCEH is now focusing on improving the data collected during a response, not only for immediate public health actions, but also for research.
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From page 73... ...
NCEH is also working with emergency managers on institutionalizing the use of data from research, particularly social vulnerability tools and information. CHALLENGES AND OPPORTUNITIES A key issue highlighted in the panel discussions is the need for common infrastructure of terminology and definitions, data collecting, reporting of information, and broad dissemination, Steven Phillips reported in his summary of the session (see Box 6-1)
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From page 74... ...
of collection and reporting tools • Determine "what is out there" that works or might work • Collect and provide predisaster health information on responders and victims (a universal electronic health record) Critical Partnerships and Collaborations • Local, state, regional, and national agencies, with Congress, to enact consensus legislation • Communities, clubs, nongovernmental organizations, and agencies • Who pays?
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From page 75... ...
Steven Phillips said that standards in terminology, data collection, and data reporting could help to eliminate the silos and the territorial boundaries and make partnerships easier to develop, like what is being done through NEMSIS. Miller reiterated the importance of laying the groundwork and connecting with people, helping people to understand that the government is there to help.
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