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Best Blogs

Chicago Summit With My Fellow A-Fib Bloggers

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

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.


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

· Cathy Buckley, Facebook Groups—Atrial Fibrillation Support Forum
· Tracy Carracedo,
· Shannon Dickson,
· Debbe McCall, Facebook Groups—Atrial Fibrillation Support Forum
· Steve Ryan, · Mellanie True Hills,
· Travis Von Slooten,
· John Warmbrodt, Facebook Groups—What is Atrial Fibrillation?

The Summit was in conjunction with the launch of the “” an American Heart Association (AHA)/American Stroke Association and 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 ‘’). 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' NASCAR

Steve with Michael Waltrip’ 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 to learn more and share a photo for a chance to have it be on the ‘#66 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.

Recommended Online Links and Resources

Resources & Links

Recommended Online Links and Resources

We have personally picked these sites for you. We value the information they present. These online sites may be helpful when seeking additional information and research on Atrial Fibrillation. 

A Word of Caution: Some web sites for A-Fib patients may be biased toward a particular technique or approach, often for financial gain. When searching online always ask yourself, “Who is paying for this website, and what is their agenda?”

In alphabetical order ♥ Last updated: Sunday, February 4, 2018

Abbott (formerly St. Jude Medical): information about A-Fib and Arrhythmias including diagnosis and treatment. Video Series Understanding Arrhythmias: Atrial Flutter (00:28); Atrial Fibrillation (1:21); Premature Ventricular Contractions (00:32);  Receiving a Heart Ablation Procedure (2:20); Preparing for Cox-Maze Procedure and Surgical Ablation (03:14); Preparing for Pacemaker and ICD Placement (2:20);. 

A-FibFacts.Info: Resource of unbiased Atrial Fibrillation facts and statistics backed up with full research citations and sources. Useful for journalists, reporters, bloggers and educators. Sponsored by Steve S. Ryan and; http://www.A-FibFacts.Info.

Pinterest logo with A-fib Facts A-Fib Facts on Pinterest: Links to the best sources for the factual information about A-Fib and A-Fib treatments (#afib)

The AFIB Report, editor, Shannon Dickson. AFib research and information, main focus is on lone atrial fibrillation (AF with no underlying heart disease). Patient forum: Founded by Dick Inglis. Heart Association

American Heart Association: heart disease/arrhythmia information;

AFA - UK; Atrial Fibrillation AssociationAtrial Fibrillation Association (AFA-UK and US): is a non-profit organization which provides information, support and access to established, new or innovative treatments for atrial fibrillation; patient advocacy and information sharing; UK branch and United States branch. Center Watch: an information source for patients interested in participating in current clinical trial; CenterWatch is a trusted source and global destination for both professionals and patients. 

NEW! Certified Comprehensive Stroke Centers: Find a state-of-the-art stroke care nearest to you at the Internet Stroke Center. Searchable database of U.S. acute-care hospitals certified as Comprehensive Stroke Centers (by the Joint Commission and American Stroke Association.) URL:

Cleveland ClinicCleveland Clinic/Atrial Fibrillation Center: a leader in the treatment of Atrial Fibrillation; Offers ‘Second Opinion MyConsult’ service (fee: $565.00; not covered by insurance or Medicare; not available in all US states). Cleveland Clinic Treatment Guide: Atrial Fibrillation‘, 12-page PDF; URL:

Clinical Trials.govClinical Trials: service provided by the National Institutes of Health (NIH); lists current federally funded and privately supported clinical trials; 

Dr Lam Dr. Lam 11 Strategies to Prevent Lone Atrial Fibrillation; Incorporating the best of the East and West may offer a sensible solution to a complicated issue. Informing patients about dangerous drugs and medical devices. Sponsored by the Paterson Law Firm.

Healio–Learn The Heart: Learn to Read Your ECG by Course a FREE online cardiology resource for those seeking to increase their knowledge of ECG interpretation and cardiovascular diseases. Start with the ‘Atrial Fibrillation ECG Review‘;

Healthfinder: U.S. Department of Health and Human Services; U.S. government’s principal agency for protecting the health of all HealthFinder.govAmericans and providing essential human services, especially for those who are least able to help themselves. Atrial Fibrillation search results->

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Heart Rhythm Society Heart Rhythm Society: professional organization for cardiologists; Patient Resources; Read about: Atrial Fibrillation, About Atrial Flutter; Database for help to Find A-Fib Specialsit

Heart Rhythm Specialist - UK - logoHeart Rhythm Specialists (UK): up-to-date A-Fib info by Dr. Dhiraj Gupta; Read: ‘Drugs or AF Ablation?’, and ‘Ablation therapy for Atrial Fibrillation‘; URL:

Johns Hopkins Medicine Johns Hopkins: Electrophysiology and Arrhythmia Service: Read about: ‘Atrial Fibrillation‘; the ‘Maze Surgery‘; ‘LAA Occlusion program‘; ‘Comprehensive Arrhythmias Guide for Patients and their Families’ (PDF). A 52-page guide focused on Arrhythmias (including A-Fib) URL:

London AF Centre

London Atrial Fibrillation Centre (UK): good explanations and graphics of A-Fib (where Prime Minister Tony Blair was treated); 

MedHelpMedHelp/Heart Rhythm Forum: Arrythmia forum; patient questions and support regarding heart issues; URL:

MedIDs_com MedIDs medical ID wallet form: Print a blank medical ID wallet card provided FREE by Just click to open and print the form. Add your medical emergency information, then trim, fold and add to your wallet;

Medifocus logoMedifocus Guides: ‘Medifocus Guide on Atrial Fibrillation: a Comprehensive Patient Guide to Symptoms, Treatment, Research, and Support. January 22, 2017, (updated annually) 168 pages with free Preview; Subscribe to free Medifocus Digest Alert on Atrial Fibrillation.’ Atd=OC016&a=a

MedlinePlusMedlinePlus logo: designed by U.S. NLM/NIH for consumers, containing hundreds of topic pages including videos, health check tools, drug, herb and supplement info, links to Fact Sheets from other NIH Institutes, the CDC, etc., and more;

NEW! MedlinePlus/Merriam-Webster Online Medical Dictionary: when you’re reading online and don’t have your medical dictionary handy, the best online medical dictionary we’ve found;

Medscape: Cardiology, Arrhythmia/EP; excellent articles, current research, and expert medical opinions on A-Fib; 

Back to Top logoMySleepApnea: About 43% of patients with A-Fib have sleep apnea; Most don’t know it. Good information and videos (see the Shaq O’Neal  video).

National Center for Complementary and Alternative Medicine:The NCCAM is the US’s lead agency for scientific research on complementary and alternative medicine; see pages: “Using Dietary Supplements Wisely” and  “How To Find A Complementary Health Practitioner“.

Nation Heart, Lung, and Blood InstituteNational Library of Medicine (NLM)/National Institutes of Health (NIH): PubMed, MEDLINE & MedlinePlus databases of U.S. government agencies and health-related organizations; and

NY Presbyterian Hospital Columbia U Medical Center

New York-Presbyterian Hospital/Columbia University: Arrhythmia/Atrial Fibrillation; Read about Maze and minimally invasive surgeries for A-Fib.

Polar logoPolar Heart Rate Monitors: Consumer (DIY) products to help you monitor your heart rate while exercising and/or while in A-Fib; Since 1977, Polar has been at the cutting edge of advanced sports technology. 

PubMed & MEDLINE Database: over 24 million citations for biomedical literature, life science journals, and online books. Free resource of the U.S. National Library of Medicine (NLM)/National Institutes of Health (NIH);

St Jude Medical: see Abbott

CHU Hopitaux de Bordeaux logoNEW! University Hospital of Bordeaux, France, Cardiology and Electrophysiology Services/LYRIC: (Cardiologic Hospital of Haut-Lévêque): World leader in treatment of Atrial Fibrillation (referred to as “the Bordeaux Group”). Headed by Prof. Michel Häissaguerre (researcher, professor and inventor of PVI for A-Fib). Electrophysiology and Ablation Unit head: Prof. Pierre Jais; URL:

U of VAUniversity of Virginia/Heart & Vascular Center: general info on A-Fib; diagnosis and treatment of Atrial Fibrillation; Watch video to find out more.

UptoDate logoUp-to-Date: review of over 350 journals for new research findings on A-Fib; very comprehensive and current; Beyond the basics, for patients, requires a subscription either weekly or monthly. URL:

WebMD WebMD: health information: Atrial Fibrillation Health Center; T/F QUIZ: ‘Do You Know Your Atrial Fibrillation (AFib) Facts?’ Articles: Atrial Fibrillation Medical Reference; URL:

Caution - when searching A-Fib websites always ask: who is paying for this site and what is their agenda?

A word to the wise…

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If you find any errors on this page, email us. ♥ Last updated: Sunday, February 4, 2018

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