Most Popular Angioplasty Web Site
The Power of Community: What Angioplasty.Org Has Learned from Patients
When 1,300 patients write in about a problem, we tell anyone who will listen!

Patient Forum
Communication is a two-way street. A primary goal at Angioplasty.Org is to bring patient insights to the attention of the medical community. Over the years patients on The Forum have brought us questions their doctors can’t answer, described rare complications, and expressed problems with medications and financial issues.

It’s easy for an online forum to become ‘the complaint department.’ All medical treatment entails risk and some people will suffer unavoidable complications, adverse events or treatment failures.

Sometimes, though, anecdotal stories from patients in different parts of the country will surface a problem that an individual cardiologist may rarely see or read about. Sometimes a patient community can discover a problem the medical research and regulatory community is simply not aware of.

Share This Story:
Bookmark and Share
Many patients have written to the Forum saying “My cardiologist told me my pain was all in my head, but I came here and found other people have this same problem. I feel so much better knowing I’m not crazy!”

When Angioplasty.Org repeatedly hears concerns from patients, we try to get the message out to the medical profession, including healthcare providers, device manufacturers and the FDA.

Forum Comments from Patients Are The Reason Why We Decided to...
  • Advocate for physician training in the wrist approach;
  • Campaign for education about antiplatelet medications like Plavix and testify at FDA hearings on stent safety;
  • Raise awareness of stent hyper-sensitivity and recruit patients for a research study;
  • Encourage less-invasive diagnostic testing and treatment, and empower patients to seek out these technologies.

#1 Reported Patient Problem: Access Site Complications
For years, difficulties with recovery from the femoral (groin) puncture site have been the biggest angioplasty-related patient concern discussed on our Forum. The fact that the Angioplasty.Org Patient Forum has 1,300 postings from patients who have had complications relating to the access site and vascular closure devices is the reason we decided to build and seek funding for our Radial Access Center for cardiologists.

#1 Patient Question: Can I Stop Taking Plavix?
Patient stories are the reason Angioplasty.Org testified to the FDA, arguing that the lack of antiplatelet education is a life and death issue. Looking at all the questions coming into the Forum about stopping Plavix, Angioplasty.Org realized that patients and non-cardiologist physicians often don’t understand how important it is for drug-eluting stent patients to stay on antiplatelets.

At the 2006 FDA Drug-Eluting Stent Safety Hearings, Angioplasty.Org Editor-in-Chief Burt Cohen and Angioplasty.Org patient community member Rick Dulin were the only individuals testifying on behalf of patients. Our message: if you give people drug-eluting stents, healthcare providers and the device industry have to assume responsibility for fully-informing patients about the life-saving necessity, and cost, of antiplatelet drugs.

Researching Hypersensitivity and Increasing Access to Less Invasive Technologies
Angioplasty.Org takes patients concerns seriously and when it's appropriate, we take action. Because of what patients have shared with us, we've raised the issue of stent hypersensitivity with researchers and industry, and recruited members of our patient community to participate in the sole research study on allergic reactions to stents. We continually monitor research on less-invasive testing procedures as options for ruling out coronary artery disease, help patients find the nearest hospitals offering less invasive treatments, and more. Throughout, we keep listening, seeking answers to patient questions, and staying in conversation with our patient community.

Keep talking, and we’ll keep being “The Voice in the Ear” of Interventional Cardiology

So, patients, keep your stories (positive and negative) coming, and share your concerns and questions! Our editors will try to get your message heard.

Physicians, we hope you will continually learn from patients and join Angioplasty.Org’s open conversation with the cardiology patient community.

Reported by The Editors, September 29, 2011

The is the first in a series of articles on how people use Angioplasty.Org.
Next up in The Power of Community: "The Forum Finds Its Way Into The Medical Literature"