By AMERICAN HEART ASSOCIATION NEWS
About five years ago, Chere McCain was having a normal Saturday. Most of her five kids were out with friends and she was in the kitchen baking. She had just opened the oven door to check on her cake when her heart stopped beating.
Her college-age son, who had been watching a baseball game in the next room, called 911 and started cardiopulmonary resuscitation. It took two shocks for paramedics to get her heart to beat again.
On Saturday, McCain will sit before a roomful of cardiologists at the annual American College of Cardiology’s Scientific Session, answering their questions about her treatment and recovery.
It is somewhat of a special occasion. This is only the second year in the meeting’s 64-year history that patients and advocates have been invited to participate as speakers and panelists.
Two were invited in 2014, according to meeting organizers. This year, there will be three, including a 13-year-old with heart failure who will give a presentation about living with a heart pump. McCain will be a panelist, giving voice to an experience that only one in 10 people survive.
“It puts a person to the situation so that we’re not just another patient,” said McCain, 50, of Escondido, California.
Heart patients have been attending the ACC meeting for years. But they have been mostly confined to the exposition hall, where they man nonprofit booths and share their stories with sponsors. Meeting organizers said it is unknown how many patients and advocates attend the sessions because there is currently no registration option for patient advocates.
The American Heart Association also does not offer patient advocate registration for its national conferences. The AHA does invite some patients to meetings to tell their stories, including former Vice President Dick Cheney, who spoke in 2014 about the many twists in his own history of cardiovascular disease.
Some medical meetings welcome advocates who work or volunteer for patient advocacy nonprofits. For example, at the American Society of Clinical Oncology’s annual meeting, one of the largest gatherings of medical professionals in the world, patient advocates can attend at a discounted rate.
Although such meetings are designed for healthcare professionals to learn about the latest research and developments in the field, the conspicuous absence of people who have actually walked the walk prompted ACC meeting organizers to start including patients and advocates in the meeting faculty.
Organizers also this year added a new patient engagement pavilion to the expo hall where doctors, advocates and patients will talk about how to improve care and support for people living with cardiovascular diseases.
On Sunday in the pavilion, Gerry Yumul will talk about his recent heart disease diagnosis and the coronary artery bypass graft surgery that followed. He hopes that mingling with scientists creates a connection between advocates and the people working hard to save lives.
But Yumul also hopes to learn, taking that knowledge back to his advocacy community at the Minneapolis Heart Institute Foundation.
“The only way we can speak about heart disease is through simple words,” said Yumul, 44, of Victoria, Minnesota. “By going there and seeing what’s going on, we can then share with our communities what advancements have been made.”
Mary Norine Walsh, M.D., chairs the ACC’s patient-centered care committee and said patients and advocates likely bring more to conferences than they receive.
“The patient perspective is invaluable to clinicians and, as such, is becoming a crucial part of our scientific meetings,” said Walsh, medical director of the heart failure and cardiac transplantation programs at St. Vincent Indianapolis Hospital.
In Texas, patient advocates have been a staple at the San Antonio Breast Cancer Symposium for decades.
“We don’t even think about it anymore. They’re part of the meeting, and that’s just the way it is,” said Kent Osborne, M.D., a longtime co-director of the symposium.
Patient advocates sit on the committee that decides on the meeting’s agenda. And since 1998, advocates have even had their own program at the meeting — an idea partly hatched by Osborne, who asked the San Antonio-based nonprofit Alamo Breast Cancer Foundation to make it happen.
Over the past 17 years, more than 3,100 advocates have attended the symposium — nearly 600 of them on scholarships. The advocate program includes educational sessions and nightly two-hour gatherings where doctors and scientists put the day’s research highlights into perspective for patients.
“Having advocates there works both ways,” said Osborne, who directs the Dan L. Duncan Cancer Center at Baylor College of Medicine in Houston. “They help us by providing a patient’s perspective on different treatments, and they learn about new discoveries and new progress in breast cancer that allows them to spread the word to the lay community.”
Patient advocates take on many roles, from local community outreach to lobbying on Capitol Hill for national policy changes. Some are patients and caregivers, and others do it for a living.
Debra Ness has been a policy advocate for three decades. In 2013, she became the first advocate member of ACC’s board of trustees.
The medical society has taken an important step in giving patients and advocates a voice at its annual conference, said Ness, who is president of the Washington, D.C.-based National Partnership for Women & Families.
“But I hope it will evolve and grow,” she said, “because the best of both worlds is one in which clinicians receive this exciting scientific information woven together with patient experience that helps them provide the best care in a way that is truly patient- and family-centered.”
The ACC Scientific Session is being held March 14-16 in San Diego. Continue to check Heart.org for news updates from the meeting.
Photos courtesy of Chere McCain and Gerry Yumul