Tag Archives: patient stories

Listening to our patients online

When I was in the first semester of my genetic counseling program, a family friend met with a GC for advanced maternal age counseling. This friend was completely dissatisfied with the experience, claiming that the counselor tried to talk her into doing an amniocentesis and only talked about the option of terminating affected pregnancies. I knew there was no way the GC (who remained anonymous to me) would have tried to talk the patient into choosing an amnio, and I knew she would have presented multiple options about what to do with the information. But, regardless of the GCs intention to present the information in a straightforward and unbiased manner, it had clearly not been perceived that way. A big problem with this scenario is that the GC involved never knew how the patient perceived the information that she relayed.

About a year ago, I set up a google alert for the terms “genetic counselor” and “genetic counseling.” Since then I’ve had patient recounts of their GC experiences delivered to my inbox every week. What an incredible resource this has turned out to be.  For example, I recently read a woman’s blog post titled “Details, Follow-up, Ultrasounds, and the Awfully Scary Genetic Counselor.” As the woman describes:

We entered the building and I filled out the appropriate paperwork in the small office, then a woman came out to get us. She introduced herself as a genetic counselor who would do a consult with us. I’d always wondered what a genetic counselor does. After asking us in a you-are-so-fragile tone, “Do you know why you are here?” she took family, healthy, and pregnancy histories and spent the next twenty minutes scaring the crap out of us.
She continues,
Diseases! Defects! Disorders! SO MUCH CAN GO WRONG WITH ANY BABY OMG! Risks! Tests! Fractions! Screenings! It was quite unsettling and a bit disturbing. As Mike said later, “She scared me out of ever having children again.” It seemed as though the point-of-view was: Unless proven otherwise, every baby has a problem.

In reading this, I remember distinctly having the exact same feeling while I was in school.  I remember talking with my classmates, all of us thinking the same thing: “with all the things that can go wrong, it’s a wonder a healthy baby is ever born.” I was also struck by how I hadn’t thought about this feeling in quite a while. It was an important reminder for me.

While the examples I give above are both somewhat negative experiences, there are positive patient accounts out there too. What better way for students to learn, teachers to train and experienced GCs to grow professionally than to read first-hand experiences from our patients?

A growing number of professions are now listening to their consumers online conversations, and learning from them:

Listening means finding the online social spaces where your audience is already communicating, monitoring the conversations that happen there, and gathering intelligence you can use to better understand your audience. Because social media is open and public by nature, listening is not only welcome — it’s expected.

So my questions to the GC community are:

  1. Should we be listening to these conversations?
  2. If so, how can we best harness this information and use it as a learning resource?


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Filed under Allie Janson Hazell