Strength in Sharing


Editor’s Note: Read this article in Spanish.

We all love a good story. When we get together for lunch with friends, we share stories. Our religious leaders almost always start their sermons by sharing compelling stories that will help us understand their message. And as members of Mended Hearts and Mended Little Hearts, we share our stories every day with the heart patients we visit.

But what about the patients we don’t get to visit? What if we could somehow harness our collective stories to help people we never get to meet?

That’s exactly what Mended Hearts and Mended Little Hearts leaders have in mind with the newly launched Patient Advocacy Network, or PAN, which was formed to equip and teach members how to be advocates for all heart patients.

While the PAN won’t allow us to personally visit with every single heart family, it will allow us to push for health care policies that affect heart families, provide a patient perspective for cardiac device makers and pharmaceutical companies, and educate other heart patients so they can make informed decisions about their health.

Peter Palumbo’s Story

The Patient Advocacy Network hinges on one thing: a patient’s story. Take Peter Palumbo’s story:

“In 2009, when I was 44, I had chest pains while travelling on business in Houston. I was ignoring the pain and thinking it was a bad case of heartburn. I ended up flying home that day and was in pain on the airplane.

“As soon as I got home, I went to an urgent care facility in Mission Viejo. The doctor called 911 and I ended up at Mission Hospital and had to have an angioplasty.”

“Weeks later, I was instructed to go to the Cardiac Rehab at Mission Hospital. I went three days a week for several weeks. There, I was able to recover from my heart attack. The staff at the cardio rehab was very helpful in my recovery from heart surgery.”

Palumbo, of Chapter 216 of Mission Viejo, Calif., has shared this story many times and is excited for the opportunity to share it on a broader stage through the PAN. By talking about his experiences, he says he can help not only other heart patients, but also the senior citizens whom he serves every day in his job as a certified senior advisor.

“With my line of work, I am in hospitals, skilled nursing facilities and doctors’ offices daily,” Palumbo says. “I am an advocate every day for seniors and want to help those heart patients who need the services of Mended Hearts.”

Palumbo and other PAN members will talk about their heart journeys with elected officials, either at the state or federal level, by setting appointments with them or communicating with them through email campaigns. They may also share their stories with the media, as PAN members work with local or national reporters who cover health issues. Or they may volunteer for a cardiac-device maker’s patient advisory panel to give them a real-life perspective on living with one of their devices. And at the most intimate level, advocacy can mean sharing our stories with new heart patients so that they are better informed.

“We want to teach people how to be empowered to make their own health care choices and be their own best advocate,” says Andrea Baer, Director of Patient Advocacy for Mended Hearts and Mended Little Hearts. “Then we want them to advocate for these policies and regulations that are going to make a difference in the lives of heart patients everywhere,” adds Baer, mother of 7-year-old Trenton, who has a congenital heart defect.

What Are We Advocating For?

While there are hundreds of health issues that need addressing, the PAN has narrowed down its priorities to these five:

  • Making life-changing innovations accessible and affordable for all cardiovascular patients
  • Encouraging medication adherence and medication therapy management
  • Promoting, ensuring access to and expanding the use of cardiac rehab
  • Reducing health disparities in those with congenital heart defects
  • Encouraging innovation in pediatric devices for the treatment of congenital heart disease

As the PAN grows and evolves, these priorities may change, but for now, they are the key issues to focus on.

Advocating Via Elected Officials

To help guide the PAN with its advocacy efforts among members of Congress, MH and MLH have turned to the Federal Group, an agency that helps groups like PAN reach their objectives in the public policy arena. They do this through expert analysis, strategic planning, coalition building and aggressive advocacy.

Scott Leezer, a congenital heart disease patient and the Director of Government Affairs for the Federal Group, spoke to PAN members during an advocacy training event in May. Having served as an aid to a senator for several years, Leezer was able to give PAN members a firsthand account of the day-to-day work that happens on Capitol Hill. Leezer emphasized that members of Congress do, indeed, listen to what advocates have to say.

“Members of Congress are well-meaning people,” Leezer says. He cited a recent survey where Congressional members rated the most important aspects of their job. The top three most important aspects of their job, according to this survey, were:

  • Feeling that they’re performing an important public service
  • Being invested in what they’re doing
  • Understanding that their job contributes to society as a whole

Congressional members also rate “staying in touch with constituents” as being a job aspect most crucial to their effectiveness, according to the survey.

“Yes, these are people who want to stay in touch with their constituents,” Leezer says, adding that it’s often easier to meet with Congress members and their staff while they’re at home in their districts, as opposed to Capitol Hill in Washington, D.C.

“I encourage you to set up meetings, to invite them to hospitals, to show them the work that Mended Hearts is doing. … I think it’s something that members of Congress would take an interest in, to see volunteers going into the hospital on their own time and giving back to the community. I think that’s something that they would be moved and touched by.”

By doing this, our elected officials can see how any health-related bills they are considering actually affect their constituents at home.

Beyond the Legislators

While getting the ear of legislators is certainly a component of advocating, it’s not the only way. Donnette Smith, President of Mended Hearts and Chairman of the Board of Directors, has served as an advocate on several occasions by talking with pharmaceutical companies and speaking at cardiology conferences — something anyone can volunteer to do.

“It’s encouraging when I go to meetings at the American College of Cardiology or other conferences and I see that they want to hear the patient’s perspective,” Smith says. “All they ever hear is the physicians’ side. We want them to know what it’s really like because we’re the only ones who know that. I encourage you that if you ever hear of an opportunity to speak about your experiences in your heart journey, volunteer for that job.”

Another group that’s always looking to hear and share meaningful human-interest stories? Journalists. You can be an advocate by calling news stations or papers and asking if a reporter would be interested in writing about the work that your Mended Hearts chapter is doing. (If you do this, be sure to work with the hospital’s media relations person, who can help get the reporter access within the hospital.)

Online Tools for Reaching More Heart Patients

Later this year, the PAN will launch a tool to allow members and other heart families to interact in a new way: an online patient database. “We’re already overhauling our database system to create one that can hold millions of patient records,” says Michele Packard-Milam, CAE, Executive Director of Mended Hearts.

This new database will hold contact information for each and every patient visited by a MH or MLH visitor (with their permission, of course) — even if that person doesn’t want to become a member right away. “Instead of us just visiting a patient and discarding their contact information after 90 days, we’re going to invite them to become a part of a community that’s not about dues. It’s not about ‘You have to join.’ It’s about ‘How can we help you?’ This is a club you never wanted to be a member of, but you’re one of us, and we’re going to take care of you when you need us,” Packard-Milam says.

The patient database will include online support groups moderated by MH and MLH members. Through these groups, patients will be able to connect with one another, ask questions and get answers. “This happens in the office about once a week where somebody calls us and says, ‘I’m having surgery tomorrow and I’m so scared.’ I’ll take their information and have someone call them back,” Packard-Milam says. “We’re going to scale this process through the Patient Advocacy Network.”

Perfect timing for MH, MLH and Patients

The launch of the PAN comes at a good time for Mended Hearts. Over the past few years, MH has seen chapters close and membership decline slightly. The volunteer base is tired, and the model of face-to-face visiting — while still very much a part of the mission and DNA — needs updating. The PAN is this update.

By training and empowering members to be advocates for all heart patients, MH and MLH have an opportunity to touch the lives of not only those families we meet in the hospitals, but of those who we may never meet face-to-face.

With the addition of the PAN, Mended Hearts and Mended Little Hearts is simply an amplified version of its original concept: a network of patients who are grateful to be alive and are helping others — not only those we meet in hospital rooms, but all heart patients.

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