MCSMN Blog

June 18, 2018

POTS and the Power and Promise of Social Media

By Lee Aase, Director, Mayo Clinic Social Media Network

This series has outlined the evolution of Mayo Clinic, and why embracing the opportunities inherent in social media was consistent with Mayo Clinic's organizational DNA and its values.

More recently, we've shared our thought process for getting into blogging, Facebook, Twitter and YouTube, along with the revolutionary impact of adopting consumer-grade video.

Now we'll turn to a couple of examples from the last decade that highlighted the interplay between established and newer forms of media, and how the broad continuum of media could help us better serve patients.

Hayley Lairmore grew up in Lake Arrowhead, California, a mile-high city in the mountains near San Bernadino. On March 8, 2009 she went to Disneyland to celebrate her 14th birthday.

That night, she woke up vomiting.

But it wasn't just stomach flu or amusement park overeating, because the vomiting continued.

Not for a few days or even a week. For months.

And up to a dozen times a day.

Over those long months Haley's mom, Christine, took her to her pediatrician, the local ER and various specialists at children's hospitals. In the end, she was told Haley needed counseling for her “obvious psychological issues” and that she was making herself sick.

Here's how Christine describes what happened next:

So, one night after 1:00am, I can’t sleep, as usual, thoughts of my daughter rolling in my brain, I was on the internet. I was researching symptoms – Google searching orthostatic blood pressure, vomiting without obvious causes, abdominal pain, etc. Somehow, I came across a YouTube video of a young teenaged girl talking about having all of the same symptoms as my daughter. Now you have to realize how shocking this was. I had been doing internet searches for months, so had my husband, but to no avail. I guess that I was just never going to give up! So I kept re-wording the way I put the symptoms in, re-ordering them, etc. And I finally saw a blog about a girl talking about her symptoms, which led me to the YouTube video, which I watched, and she was a patient of Dr. Fischer’s. Well, it was like someone had told me I just won the lottery. Here was a teenaged girl who sounded exactly like my daughter getting help from this doctor, who was researching this syndrome, which seemed treatable with medicine, diet, exercise, etc. – I nearly screamed!

I first learned of this story through a patient comment card we received after the Lairmores had traveled to Rochester in December 2009, when Dr. Phil Fischer, a Mayo Clinic pediatrician, diagnosed Haley with Postural Orthostatic Tachycardia Syndrome (POTS). I contacted Christine and asked if she would be willing to share her experience on our Sharing Mayo Clinic blog, and so we published her story in February 2010 and posted the link on Facebook on the first anniversary of Hayley's symptoms.

I happened to be in San Diego two months later, and in advance of my trip I made an appointment with the Lairmores to see them in person and capture some of their story on video with my Flip camera. Here's an excerpt:

You can see the whole story in this playlist, and we also published an update post with some of the video on Sharing Mayo Clinic.

With this video in hand, my colleagues on our Mayo Clinic media relations team were able to more effectively pitch the story to national media, which led to this story on ABCNEWS.com.

Over these last eight years, I've regularly passed on appointment inquiries, as well as requests for more information on POTS, to Dr. Fischer from parents who've seen these online resources.

He in turn has shared with me some of the correspondence he's received from parents who have used this information we've placed online to initiate helpful conversations with their local medical providers, leading to POTS diagnoses. Even though these children haven't become patients at Mayo Clinic, these videos have helped them get relief as Hayley did.

Speaking of Haley, I reached out to Christine earlier this year in anticipation of this post to ask for an update. Here's part of her response:

Hayley is doing GREAT! She is currently a manager in the Grooming salon at the Petco in Vista, California. She works full-time, supports herself, lives with a roommate in an apartment, and had 3 dogs and a cat of her own. I worry her POTS could come back some day....think I always will. She does get sick occasionally. Stomach upset, etc, but it seems to go away quickly. So I think she is fine. I will ALWAYS speak so highly of the Mayo Clinic and Dr Fischer and recommend them to anyone. I credit them for saving Hayley's life.

The POTS phenomenon started at the grassroots level, with teenage patients sharing their personal stories online. A concerned mom found these stories as well as consumer grade educational video from Dr. Fischer which led to her daughter's diagnosis and treatment recommendations. As she paid it forward through our blog and on YouTube it led to a national media story and many more patients getting help, whether they came to Mayo Clinic for care or not.

That's the power and promise of social media in health care.

In the next post in this series, we'll look at a story that highlights the ongoing interaction between social media and traditional media, and how they can combine for maximum impact.

Lee Aase is a Communications Director for Mayo Clinic's Social & Digital Innovation team and is Director of the Mayo Clinic Social Media Network. This post is part of a series called Mayo Clinic's Double Helix: How Revolutionary Organization and Networked Communication Built America's #1 Hospital.

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Tags: Christine Lairmore, Dr. Phil Fischer, Hayley Lairmore, Mayo Clinic History, POTS

Here's the key moment of this story:

"I contacted Christine and asked if she would be willing to share her experience on our Sharing Mayo Clinic blog, and so we published her story in February 2010 and posted the link on Facebook on the first anniversary of Hayley's symptoms."

This is what most organizations fail to do.

I once suggested the possibility of creating a social media/clinical SWAT team – so when a great success comes to the attention of management, the person can be carefully reached out to to see if they would be willing to share their story.

It didn't get very far, but retrospectively I think I understand why. I approached this from a marketing perspective – ie "look how wonderful this makes us look". Rather, what you did here effectively was this – "look at how many people this can help". ( which it appears it did – even the video above has has over 4000 views – if this helped on 1% of the viewers, that's still 40 people!)

It does make me wonder though – is this case, the capture of story, and the shaping of it to help others was highly dependent on your intuition and skill in 2010. Has it been systemized? Would it happen today without you? Is there a group set up to review comment cards and select folks to reach out to?

@matthewrehrl

Here's the key moment of this story:

"I contacted Christine and asked if she would be willing to share her experience on our Sharing Mayo Clinic blog, and so we published her story in February 2010 and posted the link on Facebook on the first anniversary of Hayley's symptoms."

This is what most organizations fail to do.

I once suggested the possibility of creating a social media/clinical SWAT team – so when a great success comes to the attention of management, the person can be carefully reached out to to see if they would be willing to share their story.

It didn't get very far, but retrospectively I think I understand why. I approached this from a marketing perspective – ie "look how wonderful this makes us look". Rather, what you did here effectively was this – "look at how many people this can help". ( which it appears it did – even the video above has has over 4000 views – if this helped on 1% of the viewers, that's still 40 people!)

It does make me wonder though – is this case, the capture of story, and the shaping of it to help others was highly dependent on your intuition and skill in 2010. Has it been systemized? Would it happen today without you? Is there a group set up to review comment cards and select folks to reach out to?

Jump to this post

Thanks, Matt. I don't think we've systematized comment card review for possible social media stories, but when people leave comments on Facebook I know we have reached out in similar ways.

Being alert to the opportunities is essential, and I think for us it is more of a mindset than a systematic process.

The other key element is having the tools and platforms in place that enable us to produce the stories more economically and also distribute them.

This particular story was one along the way that helped us make the case for building our team and developing that infrastructure.

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