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

5 responses to “Listening to our patients online

  1. JB

    Nice post Allie.

    In my prenatal counseling experiences, there were many times that I felt that patients would see me as “the scary counselor”. Most expectant parents don’t realize that an ultrasound might find abnormalities or soft markers that put their baby at risk. For some of these parents, the first time they hear that their baby is at risk is in the office of a genetic counselor.

    The question becomes how do we use this feedback in improving our practice (or can we). For parents who are shocked to learn that the ultrasound identified a marker, they may come to associate the counselor with the negative feelings they had, no matter how the information is delivered to them. I don’t think that we can completely avoid this type of reaction unless we are able to counsel every expectant couple prior to their ultrasound.

    My concern is that this type of blog portrays every genetic counselor/genetic counseling session as being awfully scary. Others who read this blog may come away with a very negative view based on one person’s perceptions of their experience. In one of the comments, this person’s “scary” experiences are taken to mean that the genetic counselor is “crazy”. Word of mouth can be a powerful thing!

    • Janice Rinsky

      I think this is a very interesting post, and a wonderful idea. I would love to hear feedback from patients in a format where they can express their opinions freely.

      I am a prenatal genetic counselor. Unfortunately, part of what we do is give people information that they may not be aware of, and that is often quite scary. A post like this helps us to be cognizant of the fact that although we are telling people risk factors for birth defects, it is important to stress the positive since the great majority of the time, we give good news and most people’s risks are quite low.

  2. Anne Madeo

    In answer to #1, personally, I don’t feel there is a “should we/shouldn’t we” aspect to reading online postings. If a person posts it on their blog, even if they think their blog is only read by them and their mother, they’ve put it out there. Blogs are not telephone conversations; there is no reasonable expectation of privacy in a blog post or, frankly, *anything* that you post on the internet (and to be all meta about it, that includes this message!).

    Whether it’s possible to use that text in a constructive way, to improve the care we provide or the way we provide it, is the question. I think of those posts as almost like qualitative research data. They could be fodder for previously unexplored research questions. They may provide insights into patient experiences that previously hadn’t been considered. But beyond that, I’m reluctant to draw conclusions from internet posts about genetic counseling/counselors.

  3. Thanks everyone for the comments.

    JB- I agree that, especially in the the prenatal setting, the chips are kind of stacked against the GC even before the patient walks through the door. As you said, the patient “may come to associate the counselor with the negative feelings they had, no matter how the information is delivered to them.” This is something that we will likely never be able to change.

    On occasion, I have commented on people’s posts about negative experiences with genetic counseling. I usually identify myself as a GC, acknowledge that they had a negative experience and then ask what they think could have been done differently to make the experience better. The few times I have done this, the author has responded to me (in the public comments section) with a more understanding tone, and will actually provide some feedback about the positive aspects of the session. This is one potential way to help combat some of the negative word of mouth perceptions that people who read these accounts will come away with. So, we maybe just need more GCs to set up google alerts so we can be better at responding to these posts!

    Janice R- I think you hit the nail on the head– the great benefit of this type of feedback is that the authors are expressing their opinions freely. This is the aspect of these types of personal accounts that I appreciate most.

    Anne M- What I meant by question #1 was not so much whether it was OK for us to read these accounts– as you said they are public!– but instead whether we should be making a more formal effort to stay on top of these stories and patient experiences. I like your comment about these accounts being likened to “qualitative research data.” I do agree with you that no hard and fast conclusions can be drawn from reading about these essentially anonymous patient experiences, but I do think there might be some value in more formally evaluating these stories as an opportunity to potentially gain insight into the patient experience. The most applicable setting that I see is in GC training programs, although I’d be interested in hearing other ideas if people have them.

  4. Excellent post, Allie. As I search the web every day for tweetable content pertaining to GCs, I often run across this type of blog or forum post. I think it’s valuable for health care providers to read these publicly posted accounts (though it’s probably a good idea to remember that many of them may be written during a time of intense emotion right after the appointment). Even if the patients feel that the session was negative, it’s worthwhile to read what didn’t work for them, or note what they didn’t seem to understand. As others have said already, it’s not often that you get to see such raw and honest accounts of genetic counseling experiences.

    Recently, The Medical Post had an article on sites like for physicians and whether they are useful or merely serve as a place for angry patients (or ex-spouses, the author conjectured, as the sites have no way of verifying the identity of the poster) to vent unreasonably. The author briefly interviewed several physicians and while many had a negative view of such sites, some said they were valuable for improving their practice. No such sites exist for GCs, but as Allie recommended it might be worthwhile to add ‘genetic counselor’ to your google alerts.

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