Readily Available Data Collection Tools and Research Protocols• Research tools used in previous disasters hosted on publicly accessible NLM website• Pre-approved IRB and OMB tools and protocols• Implementation guidance, forms, and participant registries

Environmental Health Research Response Network• NIEHS intramural/extramural researchers, Centers, grantees, and academic partners to help

develop and prioritize products and information for their use

• Trained “research responders” who are familiar with data collection tools, protocols, federal response procedures, and can safely deploy after a disaster

Coordination and Integration with Disaster Response and Recovery Infrastructure• Multi-stakeholder engagement and information sharing• Training exercises and materials for use by “research responders” and others

Flirting with Disaster: Integrating Public Health Research into

Disaster ResponseS. Ramsey1, R. Rosselli1, S. Rives1, S. Garantziotis2, S. Arnesen3, C. Love3, A. Miller4

1Social & Scientific Systems, Inc., Durham, NC; 2Division of Intramural Research, National Institute of Environmental Health Sciences, Research Triangle Park, NC; 3National Library of Medicine, Bethesda, MD; 4Office of the Director, National Institute of Environmental Health Sciences, Bethesda, MD

Disaster research and response has been a focus of the National Institute of Health (NIH) for more than three decades and the National Institute of Environmental Health Sciences (NIEHS) has made important research contributions to recent major disasters including the World Trade Center attack, Hurricane Katrina, Hurricane Sandy, the Deepwater Horizon Oil Spill and the Ebola outbreak in West Africa. Studies such as the Head-off Environmental Asthma in Louisiana (HEAL) study following Hurricane Katrina and the Gulf Long-term Follow-up (GuLF) study following the Deepwater Horizon Oil Spill stand out as examples of NIEHS impact on the disaster research field. The NIEHS commitment to disaster response and research is consistent with its 2012-2017 strategic plans “to identify and respond to emerging environmental threats to human health, on both a local and global scale.”

Yet, recent NIEHS disaster experience has identified a number of challenges to the initiation of timely, well-designed disaster research studies. A new systematic approach to studying disasters is needed that includes investment in disaster research infrastructure, full disaster research integration into public health response efforts and timely research response initiation immediately after disaster strikes. In response to this urgent need, the NIH has committed to fund the NIH Disaster Research Response Project (DR2). The project, developed by the NIEHS in collaboration with the National Library of Medicine (NLM), aims to create a disaster research system to help overcome these identified barriers to disaster research.

Efforts to study the health impacts and risks of disasters are hampered by barriers to collecting baseline data during the immediate, early phase of a disaster event. A list of historic barriers to the initiation of timely disaster research and DR2 opportunities to address these barriers are provided in the table below:

• The “RAPIDD” Protocol (The Rapid Acquisition of Pre- and Post-Incident Disaster Data) conditionally approved by NIEHS IRB in May 2015

•Creates a scalable (core, basic and enhanced) disaster responder registry and biorepository after a major disaster

•Features checklists in appendices to enable expedited IRB amendment review• NLM’s DR2 website which contains an online repository of data collection

surveys, protocols, rosters, consent forms, etc., and guidance for use by responders

• Readily available disaster data collection systems and supplies• Questionnaire builder capability to facilitate quick customization of surveys• Electronic data collection system using EpiInfoTM • Research kit of just-in-time supplies necessary to field RAPIDD protocol

● Perform a pilot test of RAPIDD as proof of concept● Obtain OMB pre-clearance for RAPIDD questionnaires● Expand and maintain database of protocols/tools including downloadable tools in EpiInfo● Establish funding mechanism to support deployment of on-the-ready disaster research personnel● Support for policy reform to formally integrate disaster research into the National Response Framework

DISASTER RESEARCH RESPONSE (DR2) PROJECT OVERVIEW

BARRIERS AND OPPORTUNITIES

DR2 GOALS

DR2 PRODUCTS

REVIEW OF DISASTER RESEARCH LITERATURE TO IDENTIFY TOOLS DR2 DATA COLLECTION SYSTEM

NLM DR2 WEBSITE

RAPIDD DATA COLLECTION EXAMPLE

FUTURE DIRECTIONS

The RAPIDD study has a modular approach to data collection to allow maximal flexibility during a research response. Disaster researchers may conduct limited data collection (core registry) to minimize participant burden or expansive collection of a full complement of questionnaires and biospecimens (enhanced registry) depending on research interests and disaster conditions on the ground.

A search of the peer-reviewed disaster research literature identified 540 articles which contained at least one data collection instrument. In subsequent review, 171 tools were located and cataloged for the NLM website.

As part of the DR2 effort to provide tools for the broader research community, data collection instruments have been programmed into EpiInfoTM to allow users to quickly stand up their own post-disaster electronic data collection system. EpiInfoTM allows for multi-modal questionnaire administration via the web, in-person, on mobile devices or on a desktop version.

The DR2 website (http://dr2.nlm.nih.gov/) is the site for all information pertaining to the NIH Disaster Research Response project.

The Tools and Resources section of the DR2 website contains 171 tools, chiefly data collection instruments, that are organized into seven major categories:

• Environmental exposure • Mental health • General health • Specific disaster • Specific body systems• Occupational health• Social support

Historic Barriers DR2 Opportunities

• Support from incident managers to obtain access to worksites

• Integration of research efforts into ESF-8

• Lengthy regulatory (IRB and OMB) approvals • Pre-approved IRB and OMB protocol materials

• Limited resources • Access to pre-positioned contract vehicles and quick-strike funds

• Access to relevant survey materials • Online database of vetted disaster research questionnaires

• Timely estimates of exposures • Real-time environmental monitoring and situational reports from incident managers

DR2 has developed a menu of electronic data collection instruments commonly used after disasters and posted on the NLM website. Disaster researchers can drag and drop content from these questionnaires to easily develop a new instrument in EpiInfo.