Chicago Summit With My Fellow A-Fib Bloggers

By Steve S. Ryan, PhD

Steve at AHA conference Nov 2014

AFib Digital Influencer Summit

I was one of eight A-Fib bloggers and website creators invited to attend a first-of-its-kind “AFib Digital Influencer Summit” held in Chicago, IL November 15-16, 2014. It was sponsored by Janssen Pharmaceuticals. Janssen is a unit of Johnson & Johnson. Disclosure: Janssen Pharmaceuticals, Inc. paid for my travel expenses for the summit. All thoughts and opinions expressed here are my own. The AFib Digital Influencer Summit convened web site creators and bloggers from around the US to discuss Atrial Fibrillation from a patient’s perspective.

AFib Digital Influencer Summit participants

The Janssen representatives were eager to hear our opinions even on the most controversial subjects. (For Janssen, it was like a kind of focus group.) Dr. JoAnne M. Foody, MD, from the Brigham & Woman’s Hospital in Boston, helped lead the discussions. Janssen representatives took copious notes and recordings. No subject was off-limits—conflicts of interest, how to deal with the psychological and emotional effects of A-Fib, long-term anticoagulant effects, problems with current guidelines—to mention only a few of the topics discussed. I’m not sure how they will use the info gathered or if they will publish any of it. I’ll be sure to publish any developments or conclusions that emerge from this summit.

Participants

The participants in the AFib Digital Influencer Summit were (in alphabetical order):

· Cathy Buckley, Facebook Groups—Atrial Fibrillation Support Forum
· Tracy Carracedo, ALongWayToBoston.com
· Shannon Dickson, Afibbers.org
· Debbe McCall, Facebook Groups—Atrial Fibrillation Support Forum
· Steve Ryan, A-Fib.com · Mellanie True Hills, StopAfib.org
· Travis Von Slooten, LivingWithAtrialFibrillation.com
· John Warmbrodt, Facebook Groups—What is Atrial Fibrillation?

MyAFibExperience.org

The Summit was in conjunction with the launch of the “MyAFibExperience.org” an American Heart Association (AHA)/American Stroke Association and StopAfib.org program sponsored by Janssen. I saw a brief demo of the beta software at its inauguration at the AHA exhibit hall (along with Michael Waltrip’s stock car painted with ‘MyAFibStory.com’). MyAFibExperience.org is a personalized online community for atrial fibrillation patients and caregivers. Any data saved on the site when one joins is strictly for personalizing the experience of the user.

Steve with Michael Waltrip’ MyAFIBStory.com NASCAR

In addition, to support A-Fib Awareness in September, Janssen Pharmaceuticals, Inc., partnered with professional race car driver, Michael Waltrip, and the American Heart Association. To help raise awareness, Michael Waltrip shared the story of his mother, who suffered a stroke due to untreated AFib that left her permanently disabled. Thousands of fans visited MyAFibStory.com to learn more and share a photo for a chance to have it be on the ‘#66 MyAFibStory.com car’ that Michael would race at the Geico 500 NASCAR® Sprint Cup™ race in October 2014. As a result, Janssen contributed over $53,000 to the AHA to support their efforts for AFib patients.

Our Unique Contribution to the A-Fib Community

Personally I am most grateful to Janssen for sponsoring this Summit. Many of us have been toiling in the trenches for years with little recognition. This Summit, in effect, recognized how important our web sites and blogs are to the A-Fib Community. We, Summit participants, are in a unique position. Unlike most other web sites, we are our own publishers, responsible only to our A-Fib patient readers and to ourselves. We can tell our readers what a particular study or medical development means to them as patients. We can interpret research, express our opinions, ask questions and pursue answers. We can draw conclusions that often doctors and researchers feel uncomfortable doing.

A few examples: We can say which of the new oral anticoagulants (NOACs) tested better than the others, which is safer, and which to avoid. (See my articles: The New Anticoagulants (NOACs) and Stop Prescribing and Taking Pradaxa). We can tell patients about the importance of Contact Force Sensing Catheters, but more importantly we can encourage them to seek out EPs using these catheters and exclude those who don’t. Our online destinations are the only places on the internet where patients can get this kind of frank, uncloaked information, especially when one considers that this is what A-Fib patients most need. A-Fib patients want and appreciate our efforts to go beyond impartial reporting to tell them how the research applies to their lives.

Welcomed Collegiality

It was a wonderful experience to be able to interact with so many really sharp, motivated colleagues. It may sound a little soap opera-ish to say this, but I don’t feel alone any more. (I often feel like John the Baptist crying out in the wilderness.) I hate to admit it, but I learned a lot from our lively discussions! Having these like-minded A-Fib patient advocates to communicate and discuss things with is an invaluable new resource.