Getting in Rhythm – Together

Mellanie True Hills, Speaker and CEO, StopAfib.org, Decatur, Texas
Mellanie True Hills, Speaker and CEO, StopAfib.org, Decatur, Texas

For many of those who suffer from atrial fibrillation, getting in rhythm and staying in rhythm is an elusive goal. To educate patients on options for reaching that goal, StopAfib.org hosted the first Get in Rhythm, Stay in Rhythm Atrial Fibrillation Patient Conference in Dallas this past November.  

This inaugural conference brought together electrophysiologists and a surgeon to help patients, their families, and caregivers learn more about this condition that affects more than 5 million Americans. 

As an atrial fibrillation survivor and the founder of StopAfib.org, I work with thousands of patients every month, and have seen the tremendous demand for this patient conference. Many patients need improved knowledge of their condition and answers to their questions to help them contend with the huge physical, emotional, and financial toll of afib.

Patients from as far away as Ohio, Florida, and Canada attended the conference in Dallas to hear specialists present information about the most recent developments in afib treatment. Conference sponsors included Baylor Heart and Vascular Services at Dallas, the Heart Hospital Baylor Plano, Boehringer Ingelheim, Sanofi, and Medtronic. In addition to the presentations, patients talked with representatives from Baylor Heart and Vascular Services at Dallas and the Heart Hospital Baylor Plano as well as viewed exhibits highlighting cryoballoon ablation and medical treatments for afib. Boehringer Ingelheim brought the AFib Insight booth that features a 3D interactive program providing an easily understandable, visual explanation of how afib causes strokes. The booth also provided DVDs containing the recent Discovery Channel atrial fibrillation documentary, A Heartbeat Away From Stroke (available at http://bit.ly/dcdocumentary). I even had the privilege of introducing one of the stars of the documentary, who attended the conference.  

“The Get in Rhythm, Stay in Rhythm AF Patient Conference promoted better understanding of afib, and increased patients’ confidence in managing their afib and seeking solutions,” says Robert Kowal, MD, PhD, FHRS, one of the event’s presenters.   

In addition to Kowal, presenters included Eric N. Prystowsky, MD, FHRS, a world-renowned afib expert; William T. Brinkman, MD; Jay O. Franklin, MD, FACC, FHRS; Kamran A. Rizvi, MD, FHRS; Adam Shapira, MD, FACC, FHRS; and Mellanie True Hills, StopAfib.org founder. Patients heard about: 

What afib is and why it is a serious condition; 

  • How to treat afib with medications and how to avoid afib-related strokes;
  • Catheter and surgical procedures for treating afib, including innovative new treatments that are on the horizon;
  • Ways to improve patient-doctor communication;
  • How to live with afib.

Patient response to the Get in Rhythm conference was overwhelmingly positive. Among the comments afterward, attendee comments included:

  • “Speakers stayed on topic and didn’t overwhelm us with info. The program far exceeded my expectations.”
  • “The speakers were excellent and dedicated to afib treatment and research. Best of all for me was meeting other afib patients.”
  • “I had a clearer understanding of the causes, symptoms, and treatments of afib.”
  • “We are so grateful for how StopAfib.org has changed our lives.”

The key to the success of the Get in Rhythm, Stay in Rhythm conference was how StopAfib.org worked with the doctors to help create presentations that were patient friendly, including slides that were clear and easy to read. The speakers ensured that the audience understood definitions and explanations as part of their presentations.

Also at the Get in Rhythm, Stay in Rhythm conference, Eric N. Prystowsky, MD, FHRS, an electrophysiologist from St. Vincent Hospital in Indianapolis, received StopAfib.org’s first Advocate for Patients Award for his work in helping afib patients have a voice in their treatment and for his work in prevention of afib-related strokes.

Next Year’s Plans

Because of the incredibly positive patient response from the conference in Dallas, StopAfib.org is already planning for the conference next year, with the intent to make it a full weekend conference rather than just a one-day event. Next year’s conference will feature an even larger panel of afib specialists, and there will be a mix of general and breakout sessions to provide specialized help for caregivers, newly diagnosed afib patients, and those who have had afib for a while and are more knowledgeable. There will be sessions focused on the needs of those with co-morbidities such as diabetes and hypertension that contribute to increased afib stroke risk as well as conditions such as sleep apnea that can make afib worse.  

Over the years, a number of hospitals have brought me in as a featured speaker for community and afib patient events. To prepare for these events, I have worked with doctors and marketing departments to tailor presentations specifically for consumers and patients. The best practices learned while doing dozens of these events formed the foundation for making the Get in Rhythm conference patient friendly.

To be most valuable to patients, an afib patient conference should incorporate these five principles:

  • Connect healthcare providers to patients. The patients in attendance received clear and concise information and answers to their questions from electrophysiologists and a surgeon, and even had one-on-one time with them to ask questions. 
  • Speak patients’ language. Patients do not know medical jargon, and many terms that clinicians use are unknown to patients. Even common terms such as therapy may mean something totally different to patients than to clinicians. Also, patients can be overwhelmed by too much information or too many statistics as well as anatomical photos and videos that they may have difficulty relating to. As part of the preparation for a patient conference, StopAfib.org works with doctors and presenters to ensure the conference is patient friendly. Contact StopAfib.org for help tailoring presentations specifically for afib patients. 
  • Improve patient understanding. Often patients – especially those who are newly diagnosed – don’t fully understand their condition, treatment options, and medications. They may not know that afib increases stroke risk by 500 percent, or that afib can lead to heart failure, dementia, and even Alzheimer’s disease. To be effective, a conference should provide patients with what they need to know to understand the importance of their treatment. 
  • Provide cutting-edge information. Many patients need the latest and most cutting-edge information about afib treatment in order to make decisions about their treatment path, but they need this information delivered in ways that they can easily understand. Knowing what treatments are in clinical trials can help patients understand where afib treatment is headed.
  • Create community. It was wonderful to see patients not only interacting with the doctors, but with each other as well, comparing notes about treatments and medications. Those attending the conference were invited to join other afib patients on the StopAfib.org forum (http://forum.stopafib.org) to continue discussions that began at the event and to receive and provide support. Also, patients can subscribe to the StopAfib.org ezine (http://www.stopafib.org) to receive up-to-date information, including updates from medical conferences.

Videos from the first Get in Rhythm, Stay in Rhythm Atrial Fibrillation Patient Conference will be available soon on our web site. To access the videos and find out more about future conferences, check in at www.stopafib.org/news.cfm, or sign up for our email newsletter at www.stopafib.org so you will be notified of the latest StopAfib.org news.