In recent posts we've featured Mayo Clinic Cardiac Surgeon Joseph Dearani, M.D. discussing his strategic use of Facebook pages as consolidated information sources for patients and families considering surgery, and also how those families are using Facebook groups and other social sites to better prepare for their encounters with physicians and the health care system.
In today's final installment of the series, Dr. Dearani shares the story of how interaction on his Ebstein's Anomaly Facebook page helped an international patient's parents and their physician better understand both the risks and the likely benefits of surgery in this extremely rare condition. (Scroll down to read the transcript)
The risk of congenital heart disease with every live birth is approximately one to…one in 100 to one in 120. That’s sort of the rough risk of a congenital heart defect, actually the most common congenital defect that there is; it’s pretty common.
Ebstein’s Anomaly is like one in 200,000 so it’s very, very rare. So in any given practice, at least in North America, we know from our national databases that the average number of patients that a surgeon would operate on with this lesion is one to two a year…that’s what the average is. In our practice we do anywhere from 25 to 40 cases a year.
It’s a very rare anomaly, so that really limits the number of cardiologists and surgeons that actually get into a comfort zone managing the problem, because they’re seeing one or two cases a year, and every one is a little bit different so there is this great degree of discontent, and the results with surgery have been quite mixed out there, and in fact they’ve been poor in some of the reported series. So this creates a situation where there is reservation about referral for surgery by the medical community…patients and families have, you know, great degrees of skepticism.
So, an example of where this (using Facebook for education) has been effective is an international patient with a concern…concerned patients about their child who is beyond the toddler years, you know…five, six years old, who was counseled by their physician that they should not have surgery: The risk of surgery is too high, the benefits of surgery have not been clearly defined…and there was reluctance and in fact advice against surgical intervention.
So this family goes online to search for information about this stuff and stumbles upon Mayo Clinic and my name and one thing leads to another...it’s an email to my secretary and me…it’s communication with the Facebook page…we actually were able to get connected with the doctor. And so, we actually had the doctor get on the Facebook page and review all of the information. And it was a bit of convincing on our part that there is role of surgery, and just because his personal experience has been not very favorable with surgery does not mean that surgery should be condemned…that there are in fact programs that have had really very, very good results with objective evidence that in the long term it would be beneficial.
And through, you know, across the seas, we had basically an electronic relationship, if you think about it like that, and this doctor finally came around to agreeing, “OK, I’m convinced.” And then this family made the decision to come here, and this is a few years ago now. And the child has done wonderfully well, and this particular physician has really changed his entire attitude with the approach to this problem, and is much more open to surgery, understanding that it just needs to be done in an experienced environment where there’s a documented track record so that he really feels like he’s putting his patients in an environment where it’s going to be worth their while.
All of the correspondence was…via the internet and email and electronic communication, and it made a huge difference for this child and their family, and it made a huge difference for this doctor who now has a different viewpoint on Ebstein’s Anomaly.
To learn more about how you can use social media strategically in your practice or in your hospital for the benefit of patients, consider completing in the Social for Healthcare Certificate from Mayo Clinic and Hootsuite and participating in one of our upcoming Social Media Residency sessions.