Cardiologists can steer sudden cardiac arrest patients to online community

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Chris Chiames, executive director of the Sudden Cardiac Arrest Association

In just a few short years, the Sudden Cardiac Arrest Association (SCAA) has quickly grown to become the nation’s largest public advocacy organization exclusively dedicated to sudden cardiac arrest (SCA) awareness and education. More importantly, its reputation as a useful resource for patients has helped it build an expanding base of supporters among physicians, nurses and hospital administrators.

Founded in 2006 by a group of SCA survivors, the organization has developed into a forum for SCA survivors, patients at risk, physicians, nurses, emergency medical professionals and others touched by SCA. 

SCAA hosts a library of information on its website, which is supplemented by other features such as a discussion board for SCA survivors and patients living with implantable cardioverter defibrillators (ICDs). There is also a regular “Ask the Experts” online interview forum where guests are brought in to respond to questions on various topics regarding sudden cardiac arrest, as well as news and medical updates. 

Recent “Expert” forums include a behavioral psychologist who serves as a consultant to the electrophysiology section at Northwestern Memorial Hospital; a specialist in sports cardiology; and an African-American cardiologist at Duke who addressed the disparity in care of SCA.

“We have worked very hard to build the website into a destination where people can check in regularly and always find something new or interesting,” said Chris Chiames, the association’s executive director. “We want physicians and nurses to refer their patients to us, and have confidence in our ability to provide patients useful information to supplement what they might get in a conversation in the clinic.” 

Chiames points to the Susan B. Komen Foundation as a role model. “Look at what has been accomplished in the areas of public awareness, early detection and research through the Komen Foundation’s efforts to bring all aspects of the breast cancer community together. In comparison, SCA touches many more people and we hope that by creating those same opportunities to work together, we can begin to reduce the rates for sudden cardiac death.

Over the past year, SCAA has initiated some high profile public awareness initiatives, including public service announcements on multiple national broadcast outlets. SCA survivor June Daugherty, the women’s basketball coach at Washington State University, was featured in a Fox Sports Network public service announcement (PSA). 

After the death of Tim Russert of NBC News, ABC News anchor George Stephanopoulos was featured in a radio PSA campaign across the ABC radio network, and NBC News anchor Tom Brokaw was featured in a similar PSA on the NBC network and on local NBC affiliates. In addition, four major airlines partnered with SCAA to address the topic of sudden cardiac arrest in their in-flight magazines, according to Chiames.

The media and communications efforts are supplemented by SCAA’s network of chapters and affiliates. In less than 18 months, SCAA has chartered nearly 40 local organizations whose volunteers work at the grassroots level to help spread the word on SCA risk factors and the need for better emergency response such as CPR and automated external defibrillators (AEDs).

Nurses and physicians at hospitals such as Winthrop University Hospital on Long Island, Mount Sinai Hospital in Manhattan, George Washington University Hospital in Washington, D.C., Scripps Medical Center in San Diego, University of Pittsburgh Medical Center, Mary Washington Hospital in Fredericksburg, Va., and Suburban Hospital in Bethesda, Md., are working with SCAA and have developed local chapters to involve their patients and staff. 

“By taking the traditional support group function and building it into a community education forum, we hope to involve more patients who can help us reach more people,” said Chiames. “In addition, patients are extremely flattered when their physicians ask them for help in a community education initiative. You involve many more people and make an impact.”