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!
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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.
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
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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"
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