How Facebook Changed a Physician’s Mind about Surgery

By Paul Henry / in , , , , , , , /

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 1-2 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.

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