Please select from the following questions.
- What is CARES?
- What are the benefits of participation?
- What does participating in CARES involve?
- Is the CARES website secure?
- Does CARES use identifiable patient information?
- How does HIPAA apply?
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 encourages voluntary participation from hospitals where the participating EMS Agency transports cardiac arrest patients. CARES asks that a designated contact be established at each participating hospital to enter outcome data. The hospital dataset consists of five simple questions and are 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 in order to link the EMS and hospital record. Hospitals are not required to give CARES the patient identifiers as this information is already included in the EMS record. 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 hospital has access to their data and only their data. Therefore, hospitals do not have the ability to view data from other area hospitals. The CARES software has a detailed automated hospital report and the ability to export data for all CARES patients that have been transported to your facility into Excel. Other than the hospital contact(s) at your facility, the only other people who can access the data are system administrators at the participating EMS agency, CARES staff and the state coordinator (if the state is a CARES participant). In addition, Integrated Health Systems can request permission to establish a multiple hospital user CARES account allowing for centralized data access and institutional level reporting.
What is the data used for?
Hospital outcomes data is critical in monitoring survival for out-of-hospital cardiac arrests. Not only will the hospital outcomes help determine the survival rate for cardiac arrests in your community, but will also allow for confidential internal benchmarking for the participating EMS agency. 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 arrests. The hospital has access to their data and reports at all times and can use the data internally as best determined by the hospital. CARES data is also de-identified and aggregated each April allowing for annual reports to be shared locally, regionally, state wide 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 data set is managed through a formal data sharing process.
How is a hospital contact notified of when to enter data?
When a CARES patient has been transported to a receiving facility, the CARES website will generate a generic email to be sent to the specified hospital contact. No patient information is sent in the email but the email serves as a reminder to log-in to the website when it is most convenient for the contact. The hospital contact is asked to wait until the patient has been discharged (or expired) to enter hospital outcomes so they will have sufficient information to answer all five questions.
How does a hospital participate in CARES?
A CARES contact person needs to be identified at each hospital. The only requirement for a contact is that he/she has access to hospital records to obtain outcome data. Once a contact person is identified, CARES staff will schedule a brief online demonstration of the data entry process and provide the contact person with their individual username and password for the CARES website.
How do I obtain more information about CARES?
More information is available to anyone 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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