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

The Edutainment Approach to Health: Dr. Oz and the “Radical New Procedure” of “Wrist Catheterization”

Television Set

Photo by Arte y Fotografía

Millions of people were exposed to the concept of the radial, (or wrist), approach to angioplasty recently, when the Dr. Oz show featured catheterization via the wrist in its “Dr. Oz’s Ultimate Insider’s Guide: The Newest Medical Breakthroughs.”

This story placement was definitely a win for patients; people are likely to start seeking out the wrist approach as a result of this highly visible coverage. At Angioplasty.Org we’ve been advocating the advantages for patients of this 20-year-old technique of conducting catheter-based heart procedures via wrist rather than the groin – fewer complications, less bleeding and faster recovery — since 2007. Even a brief mention of this technique on a hit TV show reaches a massive number of patients who are not seeking out in-depth reporting at sites like ours, so we’re excited to see the information get out to a larger audience.

The slight downside, of course, is the sensationalizing and de-contextualizing of the concept, which seems to be part and parcel of obtaining media attention. Dr. Oz’s guest Dr. Jennifer Tremmel did a great job of explaining the benefits of the wrist approach and how the procedure is done. But Dr. Oz, in his enthusiasm, swept away the nuances of when and why one would need a catheterization in the first place, and how this “breakthrough” does or does not change heart treatment. Patients might well be mislead by his statement positing the wrist approach as

“…a radical new procedure that can help you find out if you are at risk for heart disease and treat it at the same time.”

Ironically, two years ago Dr. Oz stated that half of all angioplasties done were unnecessary, and he now seems to be advocating Ad Hoc PCI (treating blockages with angioplasty immediately upon diagnosis), which many experts believe to be one of the primary drivers of over-stenting… but more on that subject in another post.

Wrist angioplasty is a relatively new (in the US at least) improved technique (accessing the heart via the wrist) for doing an old thing: cardiac catheterization (taking angiography images of the heart vessels to determine extent of disease and treating blockages via catheters).

Cardiologists have been diagnosing and treating heart disease via catheters for 35 years, and the wrist approach has been the predominant technique in Europe, Japan, etc. for almost a decade. “Wrist catheterization,” as Oz calls it, is a great technical improvement, but not a fundamental breakthrough in the actual treatment and diagnosis of disease. The peculiar thing is that Dr. Oz must understand this difference, of course — as a cardiac surgeon, he’d fully grasp the vocabulary around the procedure, as he’s been looking at patients’ catheterization images for his entire career.

So why not just say, “Hey, here is a better way of getting a cardiac catheterization. And sometimes, when you get that catheterization, you and your cardiologist may choose to go ahead treat your blockages with a stent”?

I would guess that, as an edutainment expert, Dr. Oz also knows that an urgent, breathless story like “New, radical, secret, unknown, exclusive thing! This changes everything, you should get it!!” will grab attention, and will be remembered. It sounds a lot more exciting than explaining “Here is a safer, less invasive option to consider, under specific circumstances, when you and your doctor have determined that a diagnostic cath may be warranted. These choices should be made in the context of being an informed patient who is seeking to understand all the options in managing and treating heart disease and seeking out physicians who offer the most current treatment techniques.

The more patients that know about this less invasive alternative the better, so the story is still a good thing overall. It’s just that, as an educator, I have to wonder, do patients really require or prefer this hyped up, less nuanced approach? Does it serve them better? It does seem to be what it takes to get big time media coverage. But hey, that’s showbiz.

For a more in-depth understanding of what “wrist catheterization” is, visit our Wrist Angioplasty FAQ and our Transradial Section; to find one of the many cardiologists in the US offering this option, visit our Radial Hospital Locator.

posted by Deborah Shaw, Angioplasty.Org Patient Education Editor

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Filed under Media Coverage, Radial Approach

Patient Representative to Vote on Practice Guidelines: One Small Step for a Patient, One Giant Leap for Patientkind?

Apollo 11 moon landing

Where no patient has gone before….

On Tuesday the American College of Cardiology Foundation/American Heart Association Task Force on Practice Guidelines announced that, for the first time, it will include a patient representative as a full voting member of the Guidelines Task Force. Angioplasty.Org reached out to authors of this recommendation to learn more about the new role of patient representative.

When I’ve observed the huge annual interventional cardiology conferences it always amazes me how invisible the patients are. Thousands of doctors gather to listen to hundreds of hours of scientific presentations, symposia and live demonstrations, all discussing ways to improve patient care and treatment outcomes. But no one hears a peep from patients. No one suggests, “How about we ask patients what they think of this new procedure/device/protocol? I wonder how this approach feels to patients; are we addressing the care issues that most affect the patients’ experience?”

In 2006 when the FDA held controversial hearings on stent safety, our editor and a patient from this site were the sole speakers addressing the issue from the patient’s perspective.

So, it’s good anytime one hears doctors talking about the importance of actively soliciting first-person patient perspective, and not just patient perspective as seen from the doctor’s perspective….

As Deepak L. Bhatt, MD, Professor of Medicine at Harvard Medical School and a co-author of the recommendation, told us:

Deepak L. Bhaat, MD

Deepak L. Bhatt, MD

“The ACC and AHA have taken the important step of trying to involve patients in the guideline development process. Doctors realize that the patient perspective is critical and decisions about the value of data cannot be made in a vacuum as professional guidelines are developed. This is particularly true when weighing issues of quality of life or a risk/benefit ratio that may vary depending on the invasiveness of a procedure (medications vs. angioplasty/stenting vs. surgery, for example). Who better to provide this perspective than an actual patient?”

For three decades the American College of Cardiology Foundation and the American Heart Association have established task forces of leading physicians to review evidence, interpret emerging data and publish clinical practice guidelines advising cardiologists in the treatment of heart disease.

This week the organizations announced changes to the methodology for creating these guidelines. The change at the top of the list: inclusion of at least one patient representative as a full voting member in the guidelines task force and on one of the writing committees.

“…the Task Force will invite patient representatives (defined as patients and former patients, patient advocates, or patient/consumer organization representatives) to participate as a member of the Task Force and a GWC [Guidelines Writing Committee] Methods to identify, select, train, and manage RWI [Relationship With Industry] and intellectual perspectives of patient representatives are proposed. Patient representatives will participate in topic selection, patient choices, values, preferences, and shared decision making.

“….Patient representatives could include patients, former patients, members of patients’ families, caregivers, and laypeople with ‘health literacy,’ including scientists, statisticians, engineers, and science writers.”

Ralph G. Brindis, MD, past president of the ACC and member of the ACCF/AHA Workgroup, explained to Angioplasty.Org his perspective on these new changes:

Ralph G. Brindis, MD

Ralph G. Brindis, MD

“This new methodology document sets the stage for the inclusion, selection, and the training proposed for a patient/consumer advocate for our guidelines going forward.  There is full consensus that the perspective of a patient/consumer advocate will enrich the guideline process– particularly in the era of shared decision making along with emphasis on ‘Patient-Centered Care.’

“We at ACC/AHA are quite excited about this addition, and view that it will have substantial positive impact in the guideline writing process.”

The report looks at questions of selection, training and role of the patient representative.  In the multi-step selection process, representatives will be nominated and reviewed by Consumers Union and other leading advocacy groups.

It’s a lot to expect one or two people to represent patients to the entire cardiology community. No matter how carefully the selection process takes bias into consideration, it will be one person’s viewpoint entering the room. Plus, the nature of the nomination and selection process appears to ensure that whomever is included will be an active, articulate, credentialed individual with previous experience in advocacy and/or health science.

I hope that more than one person is invited, and that whomever is selected to participate in developing treatment guidelines will establish an open line of communication with the public, perhaps via the internet, and solicit input from patients and caregivers. Many of the most insightful comments we receive in our community forums are from people who are not advocates or spokespersons, but individuals telling their personal stories.

It will be easy for a patient representative on a professional writing committee to get swept up in the jargon of “patient participation methodologies” and “engagement processes” in an inevitable professionalization of the advocacy role.

I urge our new patient representative to bring to bear personal narratives and insights of a broad spectrum of regular patients, to stay connected to the individuals who are on the cath lab tables, and to bring the voices of as many patients as possible into those well-appointed conference rooms, in an effort to inform the process of making heart disease decision-making and care more inclusive and responsive to the human experience of coping with illness.

posted by Deborah Shaw, Angioplasty.Org Patient Education Editor

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Filed under News, Physician Organizations, Shared Decision Making, Treatment Guidelines

Five Questions Patients Need To Ask

Ask your DoctorWhile medical research continually expands the treatment options that doctors can offer heart disease patients, the adoption of new techniques is not universal. Studies show a wide variation in the tests and treatments that heart patients receive, depending on where they live and who their doctors are.

We’ve compiled a list of Five Crucial Questions to Ask Your Cardiologist about New Heart Disease Treatments to help you make sure you get the best care.  Here are a few highlights of the topics on that list, which you might not know about yet:

A catheterization technique called the Radial Approach has been developed that is less uncomfortable for patients, and has lower complication rates, than more traditional methods. Although this approach is used in the majority of catheterization procedures in Europe, India, China, and Japan, it’s currently only being used by 10-15% of the cardiologists in the U.S.  Does your doctor use it?

CT Angiography is a high-tech, painless, non-invasive diagnostic imaging test that can rule out heart disease, sparing hundreds of thousands of patients the risk and discomfort of unnecessary invasive testing. CTA is not widely offered and not widely reimbursed yet, but many patients feel it’s worth seeking out.  Have you and your doctor considered whether it makes sense for you?

Are you a patient who wants to make sure you are being offered the most current, least invasive tests and treatment choices? Find out for yourself about the latest options, so you’re prepared to weigh the pros and cons with your doctor, by reading our full list of Five Crucial Questions to Ask Your Cardiologist about New Heart Disease Treatments. 

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Filed under Action Resource, Diagnosis & Imaging, ePatients, Radial Approach, 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