Posted by on May 23, 2018 1:55pm EST
Mellanie True Hills is the CEO of StopAfib.org. The American Heart Association and StopAfib.org together bring you MyAFibExperience.org.
Our mission at StopAfib.org is to ensure that those living with atrial fibrillation get the best possible treatment. This includes helping doctors and other healthcare professionals to understand what it is like to live with afib and how to help us manage afib, and even overcome it.
Last fall, I reached out to the afib patient community through several online discussion forums, including the MyAFibExperience.org forum, to gather input for a speech I was giving at the 2017 American Heart Association Scientific Sessions, a meeting of cardiovascular healthcare professionals from around the world. More than 1,000 of you came through when I asked, “What would you tell your healthcare providers about living with afib?”
Subsequently, I wrote an article based on that speech, which was recently published by the Journal of Cardiovascular Electrophysiology. The article shares what afib patients want our doctors to know, including five things that afib patients do not want to hear and five things that afib patients do want to hear from our healthcare providers to improve our care.
The Journal of Cardiovascular Electrophysiology agreed to make the article available for free online for 12 months so anyone can access it, print it, and share it with their healthcare team. The publication of this article encourages positive communication between patients and doctors, and sends healthcare professionals an important message about the impact of communication.
You can read and download the article here:The transformative power of understanding and trust in AF care: How doctors can provide better treatment by understanding the hearts – and minds – of AF patients
Thanks, Mellanie, for researching, writing, and getting such a good article published!
Good article Melanie. Thanks for being our advocate with all the medical people. I know they will listen to you.
Thanks, Judy and Mamazipp.
Hello. I enjoyed reading your article on the 10 do's/don'ts about AF. It will be helpful to many people involved with AF at many levels. I had one exception to your don'ts list. Initially, I was actually wanting someone to tell me AF would/would not kill me, but never heard this statement for quite some time. In fact, I believe I figured it out after reading posts in the AHA's "MAFE Blog". Also, so glad you included in the lists patients being provided resources for further AF education. And, I hope this item works its way into the ICHOM WG standard set that is currently "in the mill".
Went through your Article. It’s a wonderful read, articulate and all encompassing. Answers so many queries and questions arising in the mind of an AF victim. Thanks for your efforts for the community. Please keep us posted with new knowledge and research on the ailment.
Be all of us in NSR
My comment was not addressing the "what" (content) of what doctors say, but instead the "how" (tone and approach) with which doctors say it. It's often used to cushion the blow, but it backfires because it minimizes what the patient is feeling and experiencing. And further, it causes many patients to miss the most important message.
When the doctor says, "Afib won't kill you, but it can cause blood clots and strokes," when the doctor gets to the "k" word, the patient stops dead in his/her tracks; he/she starts processing that word and misses about the blood clots and strokes. That accounts for the anomaly of surveys of doctors telling us that more than 95% of them tell the patient about blood clots and strokes, but surveys of patients say that fewer than 50% of patients recall hearing anything about blood clots and strokes. My point is that doctors are delivering the message all wrong, which gets in the way of effective communication of the facts.
Yes, it's important to know if afib will kill you or not, but that is not the message I was delivering to the doctors. It was about how to avoid doing things that get in the way of effective communication with afib patients.
Regarding ICHOM, while most of us patients probably voted for education and health literacy on the three rounds of voting, that did not make it into the final outcomes domains. I think the biggest reason is that there is no validated outcomes measure set to measure afib literacy. I don't know what it will take to actually get a validated outcome measure for that, but there is nothing currently to use. I am part of the working group on measures (I've been on all three working groups so far), and we have spent many hours of research, calls, and reviews (I spent many hours yesterday on our proposal in advance of the call this week), and have not found anything to help in that area. Thus, it is unlikely, for multiple reasons, to be included in the final ICHOM standard set.
Shafiq and Mike,
Thanks for your kind words about the article.