Tag Archives: Allie Janson Hazell

Healthcare, Bad Health and Health 2.0

Last year I gave a mini-presentation to a small group of genetic counselors titled Health 2.0: What It Is, and Why We Should Know About It. I wish I could have just shown this clip of Esther Dyson, who provides a much more concise and current overview of the subject. Take a look (via The Health Care Blog)– it is well worth the 3 minutes of your day.

Esther discusses the current health ecosystem as being comprised of three different markets: Healthcare, Bad Health and Health 2.0. While not directly related to genetic counseling, I think this is an important concept to be aware of.  And one that seems particularly relevant given the current climate of the FDA – DTC regulation debate.

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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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Building on our Strengths


Image Credit: Trey Ratcliffe (click image for link to original photo)

Why we are well poised for tomorrow

As part of a committee I recently joined, we were each asked to put together a list of strengths of the genetic counseling profession. Although I’ve written about this before, brainstorming for this project reminded me how incredibly relevant our strengths are in the context of the future direction of healthcare in North America. I thought I’d share a few of my ideas here:

  • Our focus on patient autonomy. There is a huge trend (at least in mainstream media) towards patient-centered care. This article from the New York Times last month is a prime example. It highlights the idea that patient’s no longer want to be told what to do, but are looking for a healthcare provider that will help educate them and involve them in their own healthcare decisions. Assisting patients in making informed decisions for themselves is one of the foundations upon which our profession is built. We are, by default, way ahead of other health professions in this respect.
  • Our focus on prevention. “Preventative medicine” is a buzz term these days, especially given Obama’s healthcare plan, that calls for the promotion of “smart preventative care, like cancer screening.” (This strength was highlighted recently in a list serv discussion.)
  • Our multidisciplinary perspective. Genes are not limited to a specific organ or body part. As the medical paradigm transitions from looking at patients as a series of “parts” (cardiology, nephrology, psychology) toward a more holistic approach, we are well poised to become active participants.

I believe that knowing one’s strengths and learning to capitalize on them is essential, which is one reason why I enjoyed this activity so much. I’m interested to hear others’ perceptions of the ones I’ve listed above, and ideas about how we can build on these strengths to ensure that we maximize our potential.

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When to take the debate public

I am an advocate for public thinking. In this era of social media, collaboration and transparency, there seems to be little benefit in keeping ideas to yourself and engaging only with those with similar backgrounds and viewpoints. By opening the conversation up to a larger audience, you can challenge yourself to consider others’ opinions and create a more dynamic and evolving dialogue.

I’ve always found the genetic counseling list serv an interesting phenomenon. From a clinical perspective it is a great tool to disseminate and receive info. But as a tool to discuss professional issues, media articles, political events, etc. I’ve always found it somewhat inadequate. Interesting debates and insights get lost in inboxes and archived folders. A blog, in my opinion, is a much more appropriate and user-friendly way to discuss and document these issues.

Then, about two weeks after the launch of DNA Exchange, Dr. Tiller was murdered. With indisputable relevancy for and impact on the genetic counseling community, it seemed obvious that this event should be addressed here. We asked Betsy Gettig to put some of her thoughts on paper, and I drafted a post.  But as I watched the discussion unfold on the list serv, with all of the uncensored expressions of grief, anger, confusion and hope, I reconsidered the utility of taking the discussion public at that particular point in time. With such an emotion laden and polarizing topic such as late-term abortion, adding a public element to an already difficult disucssion seemed excessive. As simple as it sounds, the experience taught me about the value of our profession’s private discussion list- namely the ability to discuss issues directly with other GCs, and only other GCs.

As some time has passed and I have had more time to digest my thoughts and feelings about Dr. Tiller’s death, I feel more comfortable discussing it online. I still may publish the drafted Dr. Tiller post at some point, and I know others are wanting to write on the topic as well. But for the time being, I am hoping to hear what you think about the benefits of private vs. public discussion of professional issues. What do you believe to be the strengths and drawbacks of this type of forum? What do you hope to see discussed here?

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