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What is CARES?

CARES stands for the Cardiac Arrest Registry to Enhance Survival. CARES is supported by the American Heart Association, the American Red Cross, Medtronic Foundation, Zoll Medical Corporation, the Centers for Disease Control and Prevention (CDC) and Emory University Woodruff Health Sciences. The ultimate goal of CARES is to improve survival from sudden cardiac death. The registry is designed to help local EMS administrators and medical directors identify who is affected, when and where cardiac arrest events occur, which elements of the system are functioning properly and which elements are not, and how changes can be made to improve cardiac arrest outcomes. CARES utilizes an internet database system that reduces time involved in registering events, tracking patient outcomes with hospitals, and response intervals associated with First Responder and EMS response. Multiple reporting features can be generated and monitored continuously through secure online access by CARES participants and allow for longitudinal, internal benchmarking.

What does participating in CARES involve?

CARES asks that there is an EMS contact at each participating agency. This contact serves as the local CARES administrator for the agency and will oversee CARES operations. The EMS contact is the liaison between the EMS agency and CARES staff throughout participation with CARES. The EMS contact will work closely with CARES staff to determine the most appropriate methods for starting data collection and program implementation and will monitor data collection for the EMS agency and participating hospitals.

How does data get into CARES?

There are two methods of data entry into the CARES database. 1) The CARES dataset can be entered via desktop computer by the CARES EMS contact or the EMS field providers/supervisors. 2) The CARES dataset can be automatically extracted from the electronic Patient Care Report which then auto-populates the CARES registry.

How does CARES collect hospital outcomes?

CARES encourages voluntary participation from hospitals where the participating EMS agency transports cardiac arrest patients. A CARES contact person needs to be identified at each participating hospital. The only requirement for a contact is that he/she has access to hospital records to obtain outcome data. The hospital dataset consists of five simple questions and is only required for worked arrests of non-traumatic etiology where the EMS crew indicates there was ongoing resuscitation in the emergency department. The hospital contact will be given access to the CARES website (https://mycares.net) and can enter hospital outcomes at their convenience.

Is the CARES website secure?

Physio-Control, the CARES website vendor, uses Secure Socket Layer (SSL) encryption technology in transmitting Protected Health Information to their servers to help ensure the integrity and privacy of the Protected Health Information provided to them via the Internet. Encryption involves systematically scrambling numbers and letters, so that even if someone managed to intercept the information, they would not be able to decode the information. In order to take advantage of this encryption technology, customers need to have an Internet browser that will support 128-bit encryption. Physically, data is protected by a state-of-the-art electrical backup system, a series of uninterruptible power sources, redundant data storage, and redundant pathways to access data. The entire system is protected by cutting edge fire protection, and off-site data archiving to assure data integrity even in the event of a catastrophe.

Does CARES use identifiable patient information?

Yes, CARES requires the use of a patient’s name and date of birth to link the EMS record with the hospital outcomes. The name and DOB are provided via the EMS dataset. Once a record is determined to be complete by CARES staff, the record is de-identified, or "scrubbed", of patient name and DOB.

How does HIPAA apply?

CARES was approved and considered exempt from further review by the Emory University IRB. CARES is considered to be a quality improvement/assurance program conducted by a covered entity and is thus considered "healthcare operations." Therefore CARES is not subject to Privacy Rule requirements for research activities or patient authorization. In general, the Privacy Rule permits the use or disclosure of patient information for a registry if the registries are supporting public health activities and/or registries developed for health care operations of health care providers, such as QA/QI. For more information, please see the letter from the CDC and the Memorandum of Understanding between Emory/CARES and the CDC on the CARES website (https://mycares.net/sitepages/uploads/2014/CDC_CARES_DOCS_8-2014.pdf) .

Who has access to the data?

The participating EMS agency has access to all of the EMS and hospital data for their patients. EMS agencies do not have access to data from other participating agencies. Hospital contacts can view but not edit the EMS dataset for patients transported to their facility. CARES staff has access to all EMS and hospital data for monitoring and de-identification purposes.

What is the data used for?

CARES data helps local EMS administrators and medical directors identify who is affected, when and where cardiac arrest events occur, which elements of the system are functioning properly and which elements are not, and how changes can be made to improve cardiac arrest outcomes. Using the CARES software, the EMS agency will have the ability to generate "real-time" Utstein Survival Reports, EMS and First Responder response interval reports, as well as demographic reports. The EMS agency can use this data to inform system changes that will improve outcomes for cardiac arrest patients. CARES allows for confidential internal benchmarking for the participating EMS agency.

How do I obtain more information about CARES?

More information is available to anyone via the CARES website (mycares.net). Visit the CARES homepage and select the "About CARES" tab. Also, feel free to contact CARES staff via the "Contact Us" page on the CARES homepage.



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