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November 9, 2015
Why we need a US Cardiac Arrest Registry
ORLANDO, Fla. — Establishment of a single, national cardiac arrest registry is an important initial step to improve cardiac arrest survival. Dr. Lance Becker presented "Towards a US Cardiac Arrest National Registry: Where do we go from here?" at the American Heart Association’s Scientific Sessions 2015.
A national cardiac arrest registry is the first recommendation from the 2015 IOM report on cardiac arrest. Becker proposed an aspirational view to transition from a current collection of voluntary, fragmented cardiac arrest data tracking systems to a single, mandatory national registry by the year 2020.
Memorable quotes on the need for a cardiac arrest registry:
"We have to make this a mandate (to collect and report data). And the data needs to be publicly reported so we can take the steps to improve survival in every community."
"We have data that is not becoming public. A national database gives opportunity for transparency and to shine light on cardiac arrest survival."
"Citizens knowing cardiac arrest survival rates in their community will be what drives improvement."
Key takeaways on building a U.S. Cardiac National Registry
Here are the seven key takeaways from Becker's call for a single national database for cardiac arrest.
1. Single cardiac arrest database will save lives and money
The U.S. has many databases, such as NEMSIS and CARES, as well as social media databases such as PulsePoint that all view cardiac arrest from different viewpoints. But without one single database we are missing the opportunity to save money because of the duplicative efforts.
2. Collaborative leadership needed to move forward
The CDC needs to be the primary actor in collaboration with state and public health departments to collect the cardiac arrest registry data. There is an opportunity, even a need, to involve many other partners in the strategic plan process to develop a national registry by 2020.
3. Features of a national cardiac arrest registry
A single cardiac arrest registry is a database that needs to be accurate, mandatory to contribute to and with multiple inputs and outputs. It should be created in a public-private partnership with sustainable funding.
4. Solve as a new big data problem
Becker proposed that a new registry be conceived and built to solve a big data problem. Instead of taking the best of what is currently available in the many existing registries, a better approach is to devise a new system through a process of determining what is needed, as engineers might think about solving a big data problem. He proposed three parts to the system — data flows in, data storage and data flows out.
5. Cardiac registry data elements
In the proposed framework for a new national registry, data flows in through a limited, but expandable set of core data elements, from multiple sources (EMS and hospitals) and from many inputs, like emergency medical records, medical devices or social media.
6. Add big data technology experts as partners
Creating a new national database will involve logical and typical stakeholders, such as NEMSIS, CARES and CDC. But for this big data process to evolve and come to be by 2020 partners need to be recruited from technology companies, like Google and Amazon, who are already big data experts.
7. Prioritize data output toward quality improvement efforts
National cardiac arrest registry data needs to be prioritized for distribution to EMS, hospitals and communities to drive quality improvement efforts. Communities need to also have access to data output to understand local cardiac arrest survival.
Becker concluded by discussing how we get to a national cardiac arrest registry through a good process. The process should highlight money savings, stakeholder involvement, input from all directions and aim toward the goal of creating and executing a strategic plan.