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What is CARES?

CARES stands for the Cardiac Arrest Registry to Enhance Survival. CARES is a collaborative effort of 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 out-of-hospital cardiac arrest (OHCA) events, tracking patient outcomes with hospitals prospectively, and response time intervals associated with First Responder and EMS agencies.

What are the benefits of participation?

CARES participants can generate multiple reports in real-time via secure online access, allowing for longitudinal, internal benchmarking. Both locally and nationally, there is increasing emphasis on the role of data collection as the foundation for improving care. In 2015, the Institute of Medicine released "Strategies to Improve Cardiac Arrest Survival: A Time to Act", the first of eight recommendations was the establishment of a national cardiac arrest registry "to monitor performance in terms of both success and failure, identify problems, and track progress." By participating in CARES, EMS providers and hospitals are taking the initial step to saving lives in their community.

What does participating in CARES involve?

CARES asks that a designated contact be established at each participating EMS agency. This contact serves as the local CARES administrator for the agency and oversees CARES operations. The EMS contact is the liaison between the EMS agency and CARES staff throughout participation with CARES. The EMS contact works closely with CARES staff to determine the most appropriate methods for starting data collection and program implementation and monitors 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) For agencies with more than 10 records a month, the CARES dataset can be automatically extracted from the electronic Patient Care Report which then auto-populates the CARES registry. Please see the CARES website for more information on our upload process.

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 requirements for a contact are that he/she has access to hospital records to obtain outcome data and has a clinical background. 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?

CARES uses Secure Socket Layer (SSL) encryption technology in transmitting Protected Health Information to redundant secure AWS EC2 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. The data is protected with an encrypted database with daily backups, and is securely accessible with redundant pathways via the CARES website. The entire system is protected by cutting edge AWS protection, with 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 (DOB) to link the EMS record with the hospital outcomes. The name and DOB are provided by the EMS agency. 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.

Who has access to the data?

Each participating EMS agency has access to all of the EMS and hospital data for their respective patients. EMS agencies do not have access to data from other participating agencies. Hospital contacts can view but not edit the EMS portion of the CARES form for patients transported to their facility and do not have access to other hospitals' data. However, Integrated Health Systems can request permission to establish a multi-hospital CARES account allowing for centralized data access and institutional level reporting. If the state is a CARES participant, the state coordinator has access to all EMS and hospital data within the state. 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 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. CARES data is also de-identified and aggregated each April allowing for annual reports to be shared locally, regionally, statewide and nationally for both benchmarking and research purposes. CARES participates in Healthy People 2020 in an effort to track bystander preparedness at the community level. External use of the dataset is managed through a formal data sharing process.

How do I obtain more information about CARES?

More information is available via the CARES website (https://mycares.net). Visit the CARES homepage and select the "About CARES" tab. Please feel free to contact CARES staff with any questions (information found on the "Contact Us" webpage).

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