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Social Media and Healthcare: From the Advocate’s Perspective

Interview by Jodie Elrod

Interview by Jodie Elrod

The Anthony Bates Foundation (ABF) is a non-profit organization formed in 2002 that promotes heart health education and awareness of hypertrophic cardiomyopathy (HCM) through public outreach programs and heart screening events. In this interview, we speak with Sharon Bates, CEO and Founder of the Anthony Bates Foundation (@A_BatesFndtn). 

What’s new with the Anthony Bates Foundation? 

In 2008, we created the ABF Quest 2020 to screen one million people — young people, particularly — and we’re halfway there, reaching the 500,000 mark through our ABF teams across the U.S. in the ABF Community Screening Training program. 

Because of our screening program and with all the people that we’ve trained, more people are now being screened. We also reached a personal ABF milestone of over 12,000 youth screened, which is really exciting. Through this we have gathered some great data that shows 10-15% of the people we’ve screened have heart problems that they don’t know about. In affluent areas, the percentage is closer to 12%, and in underprivileged areas, it’s closer to 17%. It’s sad to see this disparity in healthcare. 

I see that you have a lot more screenings scheduled in the next couple of months, as well as more planned in 2017. 

Yes, we have a lot of screenings coming up! As soon as school sessions begin, more people start to think about their children’s health because they have to get sports physicals. Only then do they realize their child’s heart isn’t being tested, and when they hear about children experiencing sudden cardiac arrest (SCA), they see the importance of screening. According to the Institute of Medicine, over 12,500 children die every year from SCA — that is over 30 children per day! This is a public health issue, and we need to spend more time on prevention and protecting children from SCA. Early warning signs such as dizziness, shortness of breath, or heart palpitations can go undetected. It’s important to test children’s hearts to make sure they are healthy. 

What can you tell us about your work with the Cardiac Safety Research Consortium (CRSC)?

The CSRC is a global organization of researchers, pharmaceutical companies, and cardiologists that see the value of heart health with the creation of new pharmaceuticals. I approached them 2 years ago and suggested we work together to try and prevent SCA, and they saw the value in that. It’s quite a valuable partnership. We had our first think tank in 2015 and another one this year. We’re building a national database of screening results, and we’re also getting best practices in order to help other organizations that are doing screenings. There are hundreds of organizations out there doing screenings and trying to prevent SCA. 

Which social media sites do you mainly use to connect with the Foundation’s members? 

The social media sites we use to connect with our audience are Facebook, Twitter, and Instagram, particularly because we connect with schools and organizations that are effective at reaching parents. The biggest concern that I have about social media is that although there are so many ways of connecting with people, it can sometimes be difficult to reach the parents of teenagers who should be screened. So we have to find those avenues that they’re using. 

What are some of the main questions you hear on social media regarding SCA and HCM?

I think one of the biggest questions I hear is about the age at which to be screened. Our screenings originally included ages 12 and up, but in the last couple of years, I’ve dropped the age requirement to 10 and up. I want families to bring their children to screenings when they’re in puberty, and this happens at different ages in children. Kids start puberty a lot earlier now — 8 or 9 years old sometimes — and that is when they should get a baseline of their heart health. 

Times have changed — it used to be that you’d check a website for more information. What do you find useful about Twitter? 

When we first started the Foundation 16 years ago after Anthony died, email was the primary method of communication. However, no one reads email anymore — it’s too long, and there are no pictures! The interactions that we get on Twitter are mostly retweets of our messages that help us get our word out about screenings. Social media in general gives you that ability to have a snippet of time — 30 seconds or so — to get people’s attention and interest, which is important. 

Is there anything else you’d like to add?

I encourage your readers to come to an Anthony Bates Foundation screening and be a part of the movement! There are kids everywhere that deserve screenings.

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