Category Archives: History

Singing On The Table: Be Activated in 2013 with a Non-Resolution

Opera Singer

An operatic tenor in action…

One of the intriguing things about angioplasty when it was first introduced, was that patients undergoing this profound, life-changing heart treatment remain awake throughout the procedure.

In the 1980’s my partner Burt Cohen, a filmmaker, began producing live televised training courses to teach cardiologists this new non-surgical way of treating heart disease. Procedures were broadcast from a hospital catheterization lab, and projected on giant screens set up in a conference center auditorium. The patients on the hospital cath lab table would look into the cameras and wave to the audience of physicians gathered in the auditorium, all of whom were waiting to see, in real time, how the procedure turned out.

One of the most memorable moments from that period was at a live teleconference broadcast to the US from Dr. Antonio Colombo’s cath lab in Italy. The screen filled with the face of a tenor from the Milan Opera who was lying on a cath table as he began singing O Sole Mio, reaching a crescendo as a buzzing catheter-based device in his heart began shaving plaque from his arteries.

The physician audience burst into applause, it seemed remarkable that a patient whose heart was being ‘operated on’ could be that alert, aware and energized.

So now when I think about the idea of the activated patient, that opera singer comes to mind.

Of course no one is 100% activated during a catheterization – you are sedated, and probably afraid, possibly even feeling fundamentally powerless.

But the evolution of less invasive, less traumatic techniques is part of a general trend toward improving the experience of medical care from the patient’s perspective. And a focus of 21st century healthcare will be on patients actively participating in their own individualized treatment, especially heart patients, who only 40 years ago were told to rest, avoid activity, and expect to deteriorate, and today are encouraged to exercise, self-manage and assume they can live a long, full, vigorous life.

We spent a long time choosing a name for this blog: the empowered patient, the informed patient, the educated patient, the engaged patient, we tossed around many of the trending terms that signal a more patient-centered attitude toward heart health.

But activated stuck because, like that tenor’s will to sing, it seems to capture a quality that belongs to the patient and comes from within – not something health professionals do to patients (educate, inform), or permit (empower, engage), but something patients summon up and create for themselves.

An activated patient is endeavoring to do whatever she or he has to do, to get what they know in their gut they need, in order to feel well and in control, hopeful and moving forward.

In the practical sense, an activated patient is an individual who has embraced the possibility of consciously acting in their own interest by equipping themselves with the information and skills they need to be an expert in their own care.

But while an activated patient is, by definition, self-directed, an activated patient can only prevail in a system that responds.

Activated patients not only need the motivation to be well, but a ton of information, skills, confidence, support, options and perseverance. That’s where educational projects like this one come in – hoping to help provide the coaching, the techniques, the libretto, the throat lozenges, the accompaniment, and the encouragement the singer needs to sing.

I’m not a fan of resolutions, because I’m not a fan of setting myself up for failure. But I am a fan of new beginnings, fresh opportunities and future plans. It would feel pretty good to me to be activated in my own life in the coming year. Most of us would benefit from taking an activated stance toward our bodies, our ailments, our daily routines, our work and our personal lives.

Whether it’s heart disease, or aging, or family issues, or career challenges, or finances, or any of a million obstacles, there are always pretty powerful forces at work promoting discouragement, disempowerment, inaction and anxiety. Activating doesn’t mean denying these realities, it means living in and with our lives as they are, assessing our options, and acting with commitment to our own best interest.

Activating entails trusting ourselves and seeking the help we need. I’m not the type of person who could sing opera with a catheter in my heart, but I sure like the idea of doing what defines you, no matter what.

Taking steps to get better, to feel stronger, to give ourselves breathing space, to engage deeply with life, and to enjoy as much as we can, could be posited as resolutions, or shoulds, or burdens we need to discipline ourselves to take on.

Or, we could think of becoming more activated as remaining awake, as allowing ourselves to be entitled to possibility, and to hope, to want more for ourselves, because it’s what we deserve.

Becoming activated is the opposite of easy or effortless, but it feels strong, it feels purposeful, it feels good and, it turns out, it’s better for our health and our hearts.

posted by Deborah Shaw, Angioplasty.Org Patient Education Editor

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Filed under Diagnosis & Imaging, Education, History, Patient Empowerment, Shared Decision Making, Treatments

Welcome to The Activated Patient Blog

Banksy Heart Doctor

Banksy photo by Eva Blue.

Our Activated Patient Blog and Twitter feed provide up-to-the minute information for patients making decisions about heart disease treatment, and seeking to control their disease, maximize their health, and live active, engaged lives.

This blog is a companion to the many in-depth articles and tools for patients and their families posted in the Angioplasty.Org Patient Center.

Blog topics will range from evaluating the pros and cons of treatments and breaking news on clinical trials, to monitoring wellness research and sharing strategies for life-style change.

There is no “one size fits all” treatment for coronary artery disease. In November 2012, seven leading professional organizations, including the American Heart Association and the American College of Cardiology, announced new Guidelines for treating stable patients with blocked arteries, saying:

“The writing committee stresses the need to inform patients and engage them in their own care, pointing to the value of shared decision making, which also considers personal preferences… patients with stable symptoms should have the final say in how their chest pain is treated…Patient preference is very important in terms of directing care, so the answer may not be the same for every patient ….to provide quality care, we need to consistently devote time to each patient to educate them…”

Angioplasty.Org has been online for 16 years, devoted to advocating for patient participation in decision-making and providing millions of patients with in-depth medical information. We are excited to see the cardiology community acknowledging the importance of patient participation in decision-making. Information is power and our mission is to inform and empower patients to take charge of their health, work as peers with their doctors, and make choices that are right for them.

Here is the story of who we are….

A Website for Cardiologists Launches in 1997…
When Burt Cohen and I launched Angioplasty.Org in 1997, he’d been teaching cardiologists about less invasive alternatives to open heart surgery since the early 1980’s, when the concept of putting a balloon inside a heart to open up a blocked artery was first brought to the U.S. by Dr. Andreas Gruentzig. As medical communications professionals, we wanted to make sure these new technologies and emerging data were disseminated, challenged, examined and understood by as many researchers and physicians as possible.

Millions of Patients Log On…
We built a site for cardiologists, but we didn’t expect tens of thousands of heart patients to log on. Immediately after our website was launched, we began hearing from individuals with coronary artery disease who were reading clinical studies, researching doctors, asking questions about their treatment options, and telling us their personal stories. We heard from patients who had suffered permanent nerve damage after angiograms, as well as patients who six months earlier couldn’t walk without excruciating pain, and were now able to run in marathons after getting a stent. We decided to never require registration to view our “for doctors” site, never restrict public access to technical medical information, and to create a Cardiology Patients Forum where we would personally respond to patients’ questions and try to get them answers. Most importantly, we committed to advocating for patients with the leading cardiologists and researchers that we were talking to, interviewing and publishing.

Balloons, Stents, and the Internet, Explode…
Interventional cardiology — non-surgical treatment of vascular disease using catheters — is a complex, rapidly changing and controversial field of medicine that, for better or worse, grew faster than any other field of medicine in history. In the 16 years since we began this site, we have reached literally millions of patients, while remaining a grass-roots endeavor that is funded by education grants. And, we have earned a high level of respect in the professional cardiology community for our authoritative medical reporting and independent perspective: we focus all of our work on making available current, in-depth, accurate, and thoughtful information about difficult choices in heart disease treatment and management.

This Time, it’s Personal, a Commitment to Patients…
As an educator, and as the daughter of someone who underwent two bypass surgeries and multiple angioplasty procedures during 35 years of living with cardiovascular disease, I am committed to:
1) Advocating within the medical community for putting the patient’s perspective and the patient’s voice front and center. That means fighting for constant improvements in doctor-patient communication and in the safety, the comfort and the results of heart disease treatment.
2) Supporting patients in their right to educate themselves, partner with their doctors, gain access to the best treatment, and make the healthcare choices that are right for them as unique individuals.

Tweet to us @cardiopatient.

Join the Conversation
We want to share with patients what we learn in our daily discussions with leading interventional cardiologists.

We want to fuel the public conversation about advancing patient empowerment and creating a more responsive, respectful and open healthcare system.

Our focus will be on news and commentary about how patients with coronary artery disease can maximize their health and gain access to the best treatments.

We hope you will join the conversation, read and comment on this blog, subscribe to our Twitter feed, “like” us, dislike us and engage with us in our active, opinionated, courageous community of independent-minded individuals with heart disease, their families, and their physicians.

Deborah Shaw, Angioplasty.Org Patient Education Editor

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Filed under Angioplasty.Org, ePatients, History, Physician Organizations, Treatment Guidelines