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Sunday, August 28, 2011

E-Patient Communities the Good, the Bad and the Ugly

In the past 5 years I have learned a lot from the available on-line communities… the good, the bad and the ugly. No, I am not talking Clint Eastwood, although he may make an excellent moderator to any online support group.

Lets talk about the good of E- patient communities. They allow patients to connect with others and share their experiences. Communities give us the ability to open up dialogue for education. Patients learn complex medical jargon and treatment options of a given disease. They give support to those who need a listening ear. There are so many positive things about participating in online communities, but with the positives come some negatives. Online communities develop into trusting families. But what happens when there is a breach in the community?

Lets talk about the bad and the ugly of E- Patient Communities. What happens when the community you once trusted with your inner most thoughts and feelings becomes violated? When E-Patients find an online community they usually are at their most vulnerable point. Patients are scared and seeking help from their peers. They are putting their trust into sources that may be unknown. Transparency is so important in the social media world. Many online groups such as Yahoo or Goggle groups may be moderated, but who is behind the moderation? Here are some important questions to ask before joining a group.

  • Is the person moderating transparent about who they are?

  • What is their role as a moderator?

  • Who are the patients in the group?

  • Are these patients transparent?

I have seen firsthand how written words can lead to miscommunication and misunderstanding. In the end of these verbal wars it is the patient that suffers. Misguided advice can harm.

When you are sharing so much of your medical history and your personal experience it is understandable that you may want to stay anonymous. But when you are anonymous you are not a credible source. Do not be afraid of being credible. Being a credible e-patient does not mean you are an expert- but it does give your words integrity. However, think carefully about the medical information you divulge, as it becomes public knowledge once on the net.

E-patient communities have an obligation to be safe and transparent.  Over the years I have turned Mayo’s Community Page and most currently Smart Patients. I found them to be safe and reliable resources. It is important for patients to understand how online communities work. I would suggest hanging out and listening and find out if that community is right for you. Online Communities are like families, you laugh and cry together and yes sometimes bicker. They can be a great resource for patients. Don’t be afraid to ask questions. Participate and be an active listener. 

Updated 1/8/2014

Monday, August 22, 2011

Selflessness in Social Media

To be selfless is having little or no concern for oneself, especially with regard to fame, position, money, etc.; unselfish. (

I wake up this beautiful Monday morning discussing selflessness with my husband over a cup coffee. It is rare morning that he does not have to rush into the hospital. We both have spent this past Sunday with an incredible woman that defines this word.  I believe selflessness is contagious because it has spilled over to many lives influenced by Natalie Niekro.  Natalie has devoted her life to raising money for brain aneurysm research. She does not seek fame, nor does she take a paycheck for the incredible work she does with the Joe Niekro Foundation. Her devotion is purely to serve others that face incredible challenges in their life.

During one of many coffee refills, I flip on my laptop to see what is happening with the social media world. Again I find another person that defines the word. Robert W. West, Jr, PhD . We have been discussing the role of genetics in chronic illness. He is engaged with what I have to say about Fibromuscular Dysplasia (FMD). We discuss the lack of genetic information available to those with FMD and the medical community. What amazes me is that he took the time to listen, understand and explain.  Dr. West did not receive a consultation fee, nor did he gain any publicity (this was a DM conversation).  

Both Natalie Niekro and Dr. West are both examples of why social media is important in health care. Health Care in Social Media should serve others selflessly. HCSM is not about a paycheck, fame or your KLOUT score.  It is a powerful tool and when used in a positive way can impact millions of lives


Friday, August 19, 2011

Brain Aneurysm Awareness

Please join The Joe Niekro Foundation this Sunday for Brain Aneurysm Awareness Day when the Minnesota Twins host the New York Yankees at Target field.

Sunday, August 21, 2011
Twins vs Yankees
1:10 PM Game

Join us from 10am- 10:45 for a autograph session with Baseball Legends Tony Oliva, Dan Gladden and Tim Laudner. For a minimum $20 donation, you will receive a Wanna Get Lucky? shirt autographed by these former Twins Alums.  A portion of the evening's proceeds will benefit the Mayo Clinic. Session to be held at the Majestic Team Store, outside Gate 29.

Can’t make it to the game? No Problem!
You can still donate by texting!

Text to the word STRIKEOUT to 20222 to make a $10 donation
Donation amount will be added to your monthly cell phone bill

Wednesday, August 17, 2011

Two FMD heads are better than one!

Sarah  Kucharski and Kari Ulrich met each other on the Mayo Clinic Community Website. They discovered they have several things in common.

 1. They both have been diagnosed with Fibromuscular Dysplasia, a rare vascular disease.

2. They both share of love of social media and have applied for a scholarship to be apart of Mayo's Social Media Summit.

"Mayo Clinic is sponsoring an essay contest to award five scholarships for patients and caregivers to attend our Third Annual Health Care Social Media Summit and related events during the week of Oct. 17, 2011.

Voting on the community site continues until midnight Aug. 17, at which point Mayo's panel of judges will select the five scholarship recipients from among 15 finalists."

TODAY is the last day to vote

We are asking other FMD patients, their family and friends to take a moment to read the essays submitted. Log in and vote/comment. Lets make our voices heard!

Please click on links below to read submitted essays:

Sunday, August 14, 2011

Fear of Writing

Why do I fear writing? I have struggled for years with my writing skills, frustrated that my thoughts come into my head faster than I can get them on paper. I end up with  incomplete thoughts expressed through run on sentences. I have books piled on my bedside table from a chewed up Merck Manual (Thanks to my Old English Sheepdog) to several books that educate on how to write. They sit there and mock me.

This fear of mine has recently resurfaced as I was writing my essay for the Mayo Clinic Social Media Summit Scholarship.  I think back to my high school days and I remember it like it was yesterday. I was a junior at the time, in a class for those who struggled with grammar. Our English teacher must have been having a bad day and decided to take it out on her class of struggling students.  Maybe our class as a whole did not do well on certain assignment, or test. Her frustration that day has impacted me my whole life. Her words stung, "There is not one person in this class who will ever be accepted to college, your writing stinks... you may as well find jobs that do not require a college degree". Those words had crushed many aspiring souls that day.  I believed her for a long time so did my other classmates. We would talk about it in the hallways, ashamed that we were not smart enough.

Thankfully many of us did not let that stop us from pursuing what we wanted in life. My writing fear continued to be with me through my college years. I did, as many others in that English class, succeeded in making it through college. I received a AAS degree in graphic design then continued on to get an AAS in Nursing.

Writing is becoming a large part of my life. It may come in a scribble of notes, without proper punctuation but I am writing. Writing is a therapy for many with illness. It helps us make sense of what is happening in our lives. So I will continue to conquer my fear of nouns, verbs and adjectives by expressing my thoughts through written words. I will open the pages of the self help books for writers and take to heart the wisdom they have to offer. I will be open to constructive criticism and embrace the opportunity to learn from my mistakes.

My Essay: Social Media Summit Scholarship Essay – Kari Ulrich