Archives for the month of: October, 2011

While out at Mayo Clinic last week, I had many extraordinary experiences. Most were related to the Social Media Summit, including the extreme honor of participating with a panel speaking about patient empowerment and social media generated research. It truly was an experience of a lifetime, the culmination of many years of work to achieve an important personal goal.

I wasn’t prepared for how that would feel. And I definitely wasn’t ready for how I would feel about Mayo Clinic overall. That part of the story begins with Joleen.

As I made my way through Mayo Clinic that week, I saw the same woman three times. The first encounter was at 6:25 a.m. Monday in front of the gate between the Kahler subway level and the entrance to the Gonda building, a medical building that connects with the Mayo clinical building as well. I was scheduled to be at Desk C at 6:30 a.m. for blood work. The gate was locked. I’m quite sure I behaved like a mouse trapped in a shoe box, trying to scale the walls. Because in my world back home, if you haven’t arrived at “Desk C” in advance, your appointment is cancelled and you owe a cancellation fee, if not the entire cost of the visit. In my stupor of no food, water or — most important — caffeine, I panicked. Should I go above ground? Should I attempt to leave the Kahler and try to find the exterior door of the Gonda and work my way back down to Desk C? Certainly I would get lost. Perhaps buried in a snow storm. My family would never know! I was ill. This was much worse than being stuck in traffic on the metro D.C. beltway.

What I forgot, though, was that I was at Mayo Clinic, in Minnesota. Whether that is still considered the mid-west or the edge of the west, I’m not sure. But regardless, the people are, as my dairy farming grandparent from Indiana would say, “salt of the earth.” A woman with an open smiling face said, “You’re at the right place. Don’t worry.” And just like that, I stopped.

We didn’t exchange names, but she encouraged me about the Mayo system. Without being intrusive, she pointed out the identification code on my paper schedule and explained how I would present it, say my name and birth date, and very efficiently, soon be seen for whatever appointment or test I was to have. And she was not kidding. The gates glided open and a slow flood of people began their day at Desk C and beyond. In the next five hours, I did more than I would have been able to do in a year at home. AND, the results were accurate and available nearly immediately, thanks to the electronic medical records.

We met again in the atrium, as I was headed to get my EKG. We both laughed like long lost friends, but still didn’t exchange names. It was comical that in such a large busy place, we would connect again. This time, I learned that she was a regular, who had been coming from Nebraska for years, ever since the onset of her mother’s metastatic breast cancer. She said not to worry too much about the cost, because in her experience, the initial price at Mayo is less than at home, so in a way, it might make up for higher coinsurance expenses. Her mother had a medication that was three times more expensive at home, $3,600 per month. I marveled at the superior care at Mayo and she agreed. In fact, she is using the Mayo experience as the topic of her thesis, exploring how the efficiencies and culture of Mayo Clinic could be applied to our nation’s school systems. (Amen to that!)

On Wednesday, our third encounter, we finally made introductions. Joleen shared that this was how she spent her vacation each year. She would save up and come for a week to have everything taken care of at once. I could completely understand why. The beautiful buildings, lovely people, attention to detail, cleanliness … all of it makes Mayo seem other-worldly in health care. The sensation is of going to a museum to enjoy the art and scenery, but while you’re there, you might as well just fit in a head and neck CT. Why not? The staff is so efficient, you’ll have plenty of time! I actually took pictures of the statuary, murals, water features — even the goose in the cafeteria. It was like a holiday.

I miss my friend Joleen. We never once talked about why we were at Mayo Clinic. If she wasn’t feeling well, she never let it slip. And if she’s battling breast cancer, as her mother is, I think her beautiful spirit will help her win the fight.

I hope we meet again, Joleen.

Funny thing about acronyms. The pop up everywhere. And they might not exactly mean what you’d hope.

A google search of my kind of SCAD, spontaneous coronary artery dissection, can be a bit, well … disheartening.

Top of the board is “Savannah College of Art and Design.” Over and over again. It would appear this academic institution is taking over the world of fine arts and fashion. It has a television station. And a radio station. With campuses in Savannah, Atlanta, and Hong Kong, perhaps some day it will rule supreme.

Another contender for the world’s attention is “short-chain acyl-CoA dehydrogenase (SCAD) deficiency.” I’m not sure I even want to know what that is. Could be worse than spontaneous coronary artery dissection!

I’m wondering how many people are searching for this SCAD: Society for Color and Appearance in Dentistry. Maybe a lot. Lord knows my teeth could use a bit of bleaching to compete with today’s Chiclets trend.

Found these two new SCADs today: The Smith Country Appraisal District in Texas, and the Social Conflict in Africa Database, which is a tragic compilation of violence and social protest.

Most surprising to me, though, is that my diagnosis could even be misinterpreted as a fish, specifically “any carangid fish of the genus Decapterus, inhabiting tropical and subtropical shore waters.”

How to compete, I ask you?

Thank heavens Mayo Clinic is behind us now!

Coming away from this week at Mayo Clinic’s Social Media Summit with one key insight would be negligent, if not criminal. So here, for starters, is just one of many …

“Pay attention.”

You never know in life what miraculous coincidence will occur if you’re just willing to pay attention. As @EdBennett shared, Dozer the Dog gained fame and raised a crazy good amount of money for UMMC cancer research because someone paid attention. He wasn’t shooed away. He wasn’t “that damn dog.” Someone paid attention and captured the footage of Dozer the dog crossing the finish line to turn a simple moment into a meaningful event. That moment wouldn’t exist without someone paying attention to the details.

It can be hard to focus in the swirling beehive that is today’s suite of communication vehicles. As a newbie to it all, I marveled — and was at times dismayed — to see heads down, eyes locked on screens, and fingers clacking away on laptops, ipads, tablets, and phones during presentations. Was the audience engaged with the speaker? Or, those they were tweeting or messaging? Or were they only engaged with themselves? Ultimately, what key detail might the audience have missed while communicating real time?

Did the Dozer moment pass them by?

I’m the mom of 8 and 10 year-old boys. So, I’m accustomed to saying, “Pay attention.” “Did you notice that?” “Are you listening?” And I do so because miracles, large and small, begin with the details. They are only possible if you pay attention.

The fruits of tuning in to the details were overwhelmingly apparent in @ePatientDave’s moving story. And as a fellow patient, that is one important thing I take away from this week. Social media does hold unlimited potential to help, inform, guide, and market to healthcare communities. To maximize impact for all stakeholders, we have to retain our ability to stay connected with people, not just their screen names.

Blundering along, having no idea what I’m doing! But at least it’s a start. My first blog post.

My goal is to ferret out all SCAD survivors worldwide to participate in the newly announced research studies at Mayo Clinic. Not the loveliest acronym, true; and fittingly enough, SCAD stands for a deadly condition: Spontaneous Coronary Artery Dissection.

One layer of a coronary artery tears, creating a flap of tissue that reduces or occludes blood flow through the creation of a clot. The blockage can cause angina, heart attack or sudden death. SCAD occurs predominantly in women. There is little research data to rely on and no true treatment protocol … yet.

The great mystery of SCAD is that survivors are struck like lightning by the tear. All of us report healthy lifestyles, weight, and few if any coronary disease risk factors. Many have our dissections around the time of childbirth. The newly hatched research is revealing an alarming number of healthy women involved in exercise at the time of dissection, unrelated to pregnancy.

The following video explains how social media helped generate willing research participants to jump start a pilot study at Mayo Clinic, which has now been expanded into two ongoing initiatives: a global “virtual registry” of up to 200 SCAD survivors and a DNA biobank of up to 400 patients and families.