Personal Derived Health Information: A Foundation to Preparing the United States for Disasters and Public Health Emergencies

Abstract

In the days following a disaster/public health emergency, there is great effort to ensure that everyone receives appropriate care and lives are saved. However, evacuees following a disaster/public health emergency often lack access to personal health information that is vital to receive or maintain quality care. Delayed treatment and interruptions of medication regimens often contribute to excess morbidity and mortality following a disaster/public health emergency. This study sought to define a set of minimum health information elements that can be maintained in a personal health record (PHR) and given to first responders/receivers within the first 96 hours of a disaster/public health response to improve clinical health outcomes. A mixed methods approach of qualitative and quantitative data gathering and analyses was completed. Expert panel members (n = 116) and existing health information elements were sampled for this study; 55% (n = 64) of expert panel members had clinical credentials and determined the health information. From an initial set of 6 sources, a step-wise process using a Likert scale survey and thematic data analyses, including interrater reliability and validity checks, produced a set of minimum health information elements. The results identified 30 essential elements from 676 existing health information elements, a reduction of approximately 95%. The elements were grouped into 7 domains: identification, emergency contact, health care contact, health profile -past medical history, medication, major allergies/diet restrictions, and family information. Leading experts in clinical disaster preparedness identified a set of minimum health information elements that first responders/receivers must have to ensure appropriate and timely care. If this set of elements is used as the fundamental information for a PHR, and automatically updated and validated during clinical encounters and medication changes, it is conceivable that following large-scale disasters clinical outcomes may be improved and more lives may be saved.