Speaking of Peer-to-Peer Support

As nearly 20,000 heart specialists and industry representatives converged on San Diego this spring for the Scientific Sessions of the American College of Cardiology (ACC), the cavernous exhibit hall at the Convention Center was transformed into the world’s largest showcase of heart treatments, with more than 275 companies and organizations touting new products and services in a space big enough to hold nine football fields.

The exhibit hall included a Sim Center, where doctors could practice their skills on “virtual patients,” as well as Industry-Expert Theaters, highlighting the latest developments in cardiovascular treatment. And for the first time ever, there was a Patient Engagement Pavilion, where organizations like Mended Hearts could show how empowering patients can improve the outcome of cardiovascular treatments, cutting hospital time and costs.


Patient-centered Care

Mended Hearts has been exhibiting at the ACC conference for several years, “bringing the voice of the patient into our proceedings and, in so doing, adding a crucial and very human grounding to our deliberations,” says Kevin Fitzpatrick, the ACC’s newly appointed chief innovation officer. “This year we made a special effort to bring together a number of patient advocacy groups, anchored by Mended Hearts and Mended Little Hearts, and created a special physical community for them within our meeting.”

The pavilion, hosted by the ACC’s CardioSmart, featured displays from groups ranging from StopAFib.org to the Association of Black Cardiologists. It also highlighted the ACC’s own patient-centered programs, such as SMARTCare, the Patient Navigator Program and Shared Decision Making Tools.

“Health care overall is shifting to a more patient-centered approach as patients are becoming more engaged in their own care,” said an ACC press release announcing the pavilion, adding that the ACC “recognizes that physicians need the right tools to better communicate and work with their patients in making treatment and care decisions.”


Spreading the Word

For Mended Hearts, the pavilion offered a forum where it could unveil its first detailed analysis of the effectiveness of its programs with its recently released study, “The Power of Peer Support in Patient Outcomes.” The report noted that readmission rates for heart failure patients at the 164 hospitals with organized Mended Hearts visiting programs is significantly lower than the average at other hospitals across the country.

In the study Mended Hearts patients indicated that only 19 percent were readmitted to a hospital within 30 days of their discharge, compared to the national average of 25 percent. One reason: patients in the Mended Hearts program tend to do a better job of taking care of themselves. Nearly 90 percent said they were diligent about taking their medications — roughly the same percentage as those who rated their Mended Hearts volunteers as being very or extremely helpful in the recovery process.

During a presentation at the Patient Engagement Pavilion, Michele Packard-Milam, CAE, executive director of Mended Hearts, outlined the results of the survey, stressing the importance of lowering readmission rates at a time when the government is using the rates as a way of evaluating hospital efficiency.

Donnette Smith, executive vice president of Mended Hearts, then gave her own story, telling of how she was just 40-years old when she had the first of three heart surgeries to replace a bicuspid aortic valve. “I was just sobbing,” she told the audience. “I thought my life was over.” And then she was visited by a Mended Hearts member who assured her she would survive and put her on the path to recovery. Over the past 27 years, she has been increasingly involved in Mended Hearts: “I’ve been able to lead a normal life and I just wanted to give back.”


Issues Affecting Heart Patients

Behind the scenes, the ACC conference gave a chance for Mended Hearts leaders to meet with the organization’s Corporate Advisory Council to discuss upcoming plans, as well as general issues and trends that could have an impact on heart patients. Mended Hearts meets with the corporate advisors at the ACC annual conference each March and at the scientific sessions of the American Heart Association each November.

“We always learn about new drugs that are in the process of being approved, and find out about new ideas for patient support and how to generate better outcomes,” Packard-Milamsays. “For Mended Hearts members particularly, it’s an exhilarating look at what’s coming down the pike in the form of new therapies, treatments, drugs and opportunities to heal — and prevent — heart disease.”

Packard-Milam says two pharmaceutical companies she met with at the ACC are both working on “promising new approaches to heart failure” that could come to fruition sometime later this year, constituting “the first breakthrough for heart failure in decades.” Other companies are developing new “super-statin” drugs that could help people do a better job of lowering their LDL or ‘bad’ cholesterol.

She adds that the Patient Engagement Pavilion gave Mended Hearts a chance to interact with other patient-focused organizations. “We always learn something when we get to see them,” she says. “Everyone is focused on the mission of improving outcomes, and most of our work is synergistic with other organizations, since Mended Hearts has such a distinctive, peer-to-peer, in-person model.”

Dean Calbreath has been a business journalist for the past three decades, including a significant amount of coverage of the health care industry. He currently works at The San Diego Daily Transcript, where health care is one of his beats.


Heart Valve Patients, Makers Meet Face-to-Face

Not everyone gets to meet somebody who has handcrafted a piece of their heart.

But that’s what happened in March when dozens of heart valve recipients journeyed to Edwards Lifesciences Inc., in Irvine, Calif., where they met the people responsible for the valves that keep their blood flowing.

“We brought them there to connect with one another and to meet the dedicated team of employees who handsew every heart valve, stitch by careful stitch,” says Michael Mussallem, Edwards’ chief executive. “Needless to say, it was a very emotional day.”

More than 100 patients and caregivers came to Edwards’ first Patients Day —timed in conjunction with the ACC conference — to tour the manufacturing plant, hear from Mussallem and other executives, talk with patient advocates about how to make their voices heard, and meet the workers who created their specific valves, matched by serial numbers.

The most impressive stories came from the visitors themselves. A Marine Corps veteran from Michigan, who had received an Edwards valve just two months earlier, proudly noted how he was on his feet 48 hours after the transcatheter aortic valve replacement (TAVR) procedure, which uses an expandable catheter to insert an artificial valve through an artery into the beating heart.

A Colorado teacher spoke of how she survived Hodgkins lymphoma only to find that her aortic valve needed replacement. With her chest weakened from radiation, the doctors ruled out open-heart surgery and instead inserted an Edwards valve using the TAVR procedure. It wasn’t long before she could once again brave a classroom full of middle-schoolers.

Long-distance runner Tom Price told how he had run seven marathons before a faulty aortic valve left him so weak he could barely run a mile. In January 2007, he went to St. Joseph’s Hospital in Syracuse, N.Y., to get a new valve from Edwards. Within eight weeks he was running again, joined by other heart patients he met through his website “Cardiac Athletes.” In November 2008, he ran his eighth marathon.

Price says that as a member of Mended Hearts, he often returns to St. Joseph’s to visit other patients and give them “a spark of encouragement on their road to recovery.”

“Patients like these remind us of the importance of our daily work, and the chance to bring our ideas out of the lab, into the clinic and to the patients and physicians that need them most,” Mussallem says. “Each heart valve represents a patient and their family, who otherwise would miss out on both the extraordinary and precious ordinary experiences of their daily lives.”


ACC’s New Chief Innovation Officer Calls Mended Hearts ‘Integral’

An epidemic of heart disease, obesity and diabetes is threatening to overwhelm health care providers around the world, says Kevin Fitzpatrick, chief innovation officer at the American College of Cardiology (ACC)

But Fitzpatrick predicts that within the next five years the crisis will spark unprecedented collaboration between governments, health systems, nonprofits, insurers, consumers and medical professionals, leading to new models of care.

“We cannot hope to confront the epidemic without ‘all hands on deck,’” Fitzpatrick says. “The team approach to care will be ever more critical as we more effectively align our resources to improve care and reduce cost. And of course, the patient, the family member and the community are key members of that team.”

ACC’s creation of the chief innovation officer position in January is one sign of the rapid changes occurring in health care. One of Fitzpatrick’s top goals is to explore new coalitions between health care systems and retailers, med-tech incubators, biometric specialists, manufacturers and patient advocacy groups such as Mended Hearts.

“The point of intersection between these entities will yield some of the most profound and unexpected innovations in
patient care,” he says, adding that the beneficial potential of groups like Mended Hearts has never been greater.

“Mended Hearts has been integral in helping the profession understand the critically important roles of the family and caregiver in the recovery of the patient,” he says. “As measures of patient satisfaction and patient-reported outcomes are increasingly important in our evaluation of quality, we’ll need the guidance of groups like Mended Hearts in setting those standards.”

Fitzpatrick, trained as a medical associate at Duke University, has several decades of experience in the health care industry, including heading business development at two medical data publishers: Ovid Technologies and Lippincott Williams & Wilkins. ACC hired him as senior vice president for business development in 2008 and promoted him to executive vice president five years later, a title he continues to hold.

In his new role, Fitzpatrick’s duties will include leading ACC’s team of Innovation Ambassadors in a partnership with 1776, a global incubator and investment fund, to identify startups trying to solve major health care issues.

“There is no discipline in health care riper with innovation opportunity than cardiovascular medicine,” he says. Even though heart care has had “a stunning record of successful innovation over many decades,” he says, there is still room for improvement, especially with the new data banks that are providing “stunning new insights,” into heart disease.

“The term Big Data is often misused, but in health care we truly do have massive data sets that we can now interrogate to identify gaps in care, derive new clinical insights and drive CQI (continuous quality improvement),” he says.

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