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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1 Introduction
1 Introduction
Pages 1-10
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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.
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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)
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• 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 deploy ment times and administrative burden.
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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.
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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)
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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.
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• 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)
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Some participants also discussed engaging the community in data collection efforts and fostering "citizen science." o Public health agencies and the health care sector can both inform key research questions and help to apply the infor mation 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 ac cess to affected persons/populations to capture essential in formation to support research efforts during response.
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o 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.
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