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Data Sources for the At-Risk Community-Dwelling Patient Population

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4. Recommendations

The objective of this study was to determine how easy or difficult it would be to quantify the population of individuals who depend on medical assistance and who, if their services and/or support were disrupted during an mass casualty event (MCE), would potentially seek those services in their local hospital emergency department. The investigators began by exploring a variety of databases containing information on the medical needs of these individuals, but found that no one data source could provide the level of detail they were seeking. Information was available, but no corresponding information, such as caregiver availability, presence of a medical condition, or the level of disability, was provided. Furthermore, there is considerable overlap of information in these databases, making any combination of groups prone to overestimation.

The investigators attempted an alternative approach to developing population estimates, "from the ground up," which involved contacting local agencies in one city that have regular interactions with at-risk individuals and soliciting their estimates. Identifying the agencies and the most appropriate contact within the agency, as well as overcoming their hesitation to provide information, was quite labor intensive, and the investigators were not confident that the estimates they were able to derive are accurate.

Although neither approach yielded reliable estimates of the at-risk population, further exploration of these databases has the potential to provide the level of detail needed. The searches in this study were limited to only those databases that are publically available (i.e., that did not require a data user agreement (DUA) or submission of a proposal and fee). Data on medical/clinical needs (e.g., IVs, enteral nutrition, complex wound care, insulin injections, urinary catheters/colostomies, ventilators, VADs, and hospice care) are the areas in which data are most lacking. This type of information could, however, readily be obtained from Medicare and Medicaid claims. Although each has its limitations (Medicare covers only the elderly and disabled; Medicaid covers only the poor and each State's eligibility and benefits vary), the population covered by these public payers is substantial.

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