Category Archives: Treatment Guidelines

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

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


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