When I was a little boy, I remember watching the show, That’s Incredible. It featured all kinds of unbelieveable or freakish things. I has very low expectations about the show’s credibility. I just wanted to be entertained.
Today, I am attending the Parent Heart Watch conference. I sitting with about 30 other families that have lost children to sudden cardiac arrest. We are listening to doctors talk about the incidence of sudden cardiac arrest and death in children. Unlike the content of That’s Incredible, I expect that the facts and findings from the medical community will be credible and based on scientific research.
There is a pretty vigorous debate about the need for ECG exams on our young athletes. There is the issue of cost, liability, false positives, and quite frankly, the number of children affected. This is a healthy debate, and as a parent who has lost a child, I recognize the validity of the economic argument – “there just aren’t enough kids dying to spend the money.” However, this argument, when offered by a world renowned medical expert, must be based on scientific data that is credible and reliable.
Barry Maron, M.D., Director of the Hypertrophic Cardiomyopathy Center at the Minneapolis Heart Institute Foundation, issued a recent report that found that the incidence of sudden cardiac arrest in young athletes is “relatively low.” His report determined that only 1,866 young athletes died from 1980 – 2006. His findings are based on data found in a national registry. That means that about 66 student athletes die every year from sudden cardiac arrest. Hmmm . . . world renowned expert . . . national registry . . . findings, data, studies, reports . . . case closed, right? Unless, you stop to ask yourself, “what is this finding based on?”
There is no national registry. The registry is based on data that was gleaned from newspaper articles and internet searches. If a newspaper didn’t carry the story, or the story did not show up in the search engines, the death was not reported and it did not end up in the “national registry.” Furthermore, the athletes did not include children engaged in recreational sports, like Little League or intramurals.
This is the kind of research that I expect from 10th graders in my U.S. History class. I couldn’t get them to stop using Google or Wikipedia. I have different much higher expectations of medical experts that influence public policy. Dr. Maron’s finding should have been the basis of a hypothesis that “incidence of sudden cardiac arrest in the youth is relatively low.” He should have used that hypothesis to conduct a scienfic study to support his hypothesis. Instead, he took advantage of his clout and reputation, and offered the world something much less, and now the truth will be that much harder to find.