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The Revolving Data Door

It's time to close the gap that exists in EMS operations, planning and research, and request that your receiving hospitals work with your agency to develop a process that allows you to obtain the patient-outcome data you need to conduct essential research, evaluate your system and measure the performance of your personnel. This serious data deficiency has been haunting EMS systems for decades and needs to be addressed to enable us to close the loop on the care of prehospital patients.

One of the tasks outlined in the Institute of Medicine (IOM) report Emergency Medical Services: At the Crossroads, Committee on the Future of Emergency Care in the United States Health System was to describe a desired vision of the U.S. emergency care system and recommend strategies for achieving that vision.

The committee, in Recommendation 5.2, calls on hospitals, trauma centers, EMS agencies, public safety departments, emergency management offices and public health agencies to develop integrated and interoperable communications and data systems. This recommendation opened the door for EMS systems to approach their receiving hospitals and start a dialogue to move toward this goal.

Although this issue seems new, it has been a long-standing concern. The availability of uniform, reliable„EMS data surfaced as a major priority in the late 1990s when the Emergency Medical Services Agenda for the Future: Implementation Guide was developed. In fact, data availability was cited as fundamental to a number of the agenda's goals, such as determining the costs and benefits of EMS and improving„EMS research.

In 2001, an investigation by the Government Accountability Office of state and local EMS agencies pointed out that the greater availability of data and improved information systems were critically needed to monitor agency performance and quantify and justify system needs to the public and decision makers.

Some initiatives have attempted to address this deficiency. The Uniform Prehospital EMS Datasetƒdeveloped in 1993 by the Department of Health and Human Services, NHTSA and the U.S. Fire Administrationƒcontained important data elements, including patient characteristics, dispatch and incident data, financial information and EMS system demographic data. But this data alone doesn't allow„EMS agencies to close the loop.

The National EMS Information System (NEMSIS), managed by NHTSA in coordination with the Health Resources and Services Administration, is a continuation of this work, designed to improve data standardization and link disparate EMS databases at the federal, state and local levels. NEMSIS will also serve as a national EMS database that can be used to evaluate patient and EMS system outcomes, benchmark performance, facilitate research efforts, develop nationwide EMS training curricula, determine national fee schedules and address disaster preparedness resource issues.

But all of these efforts will fall short if EMS agencies aren't allowed access to patient-outcome data at their receiving hospitals.

The IOM committee noted that, because of greater scrutiny of privacy provisions related to HIPAA, it's difficult for EMS agencies, even when performing quality-assurance activities, to obtain patient-specific outcome data. So the committee recommended that Congress modify the Federalwide Assurance program regulations "to allow the acquisition of limited, linked, patient-outcome data without the existence of a Federalwide Assurance program."

Ultimately, because HIPAA regulations can deter systems research by inhibiting the flow of information across setting -- from dispatch to EMS to a hospital or trauma center -- related to an episode of care, specific regulatory language is needed to clearly enable EMS systems to obtain specific outcome data when needed to research and assess the quality or effectiveness of care.

The IOM committee therefore believes Congress and state governments should "amend patient confidentiality regulations to allow, under strictly defined circumstances, out-of-hospital and ED records to be linked with longitudinal data on patient outcomes."

But you shouldn't wait for federal or state legislation to start to resolve this long-standing data deficiency because the data door swings both ways. You provide data to the hospitals, and they should reciprocate by providing outcome data to your agency in a secure manner.

The reality is that you become linked to the receiving hospital's patient-record system when you arrive and transfer care -- and your patient care recordƒover to them. Therefore, you should be able to obtain follow-up information on someone who started out as "your" patient.

The precedent for this data sharing has already been set, with some EMS agencies successfully breaking through the hospital data barrier and obtaining outcome data. The Santa Barbara„County (Calif.) Care Data Exchange project meets many of the goals established by the Emergency Medical Services Agenda for the Future and serves as a model for EMS systems that develop initiatives to achieve regional health information sharing. Approximately 75% of the health-care providers in Santa Barbara County are involved in the project, which allows for the controlled sharing of clinical information among medical groups, hospitals, clinics, laboratories, pharmacies, payors and EMS agencies.

To assist you in obtaining agreements for receipt of patient-outcome data, a special area has been established on JEMS.com (Patient Outcome Data Initiative) where agencies will be encouraged to post and share their success stories, and more importantly, the processes they followed with their hospital facilities to obtain patient-outcome data.

Review the approaches followed by other systems to clear this important data hurdle, and then meet with other services in your region to develop a joint game plan for your approach to your receiving hospitals.


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