There’s more to managing heart disease than the procedures and medications used to treat it. Delivering peer support could improve outcomes, reduce healthcare costs and give patients better quality of life. 

What a difference a day makes. Especially if that day happens to include a heart diagnosis, surgery or a cardiovascular procedure. When that moment occurs, the patient and the family often experience a shock that reverberates for months, sometimes years. The day of a heart attack, stroke, heart failure diagnosis or open heart surgery changes all of the days that follow, not only for the patient, but for everyone who cares about him or her.

The American Heart Association estimates that about 85.6 million Americans are living with some form of cardiovascular disease or the after-effects of stroke. Each year in the United States, 40,000 babies are born with congenital heart disease.

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Injecting hope into healthcare

As we move from a treatment approach based on quantity to one based on quality, there is a strong need for transitional care from hospital to home and then onward to normal life. Further, as the pace of treatment speeds up and the healthcare system widens its gaze beyond the clinic and hospital doors, we must figure out how to create a more comprehensive care environment, where patients are active managers of their own journeys.

In 2013, a Health Affairs policy brief noted, “The Affordable Care Act identifies patient engagement as an integral component of quality in accountable care organizations…and in patient-centered medical homes. Shared decision making is so valued in the law that a separate section (3506) calls for new Shared Decision-Making Resource Centers to help integrate the approach into clinical practice. No funds have yet been appropriated to implement this section, however” (online Feb 14, 2013).

Without funding or a clear path to create patient engagement, how should we proceed? The figure at right shows the typical channels for patient participation: direct care, organizational design and governance, and policy making. Peer support is not mentioned as part of any of these channels, but at Mended Hearts, we believe there is a significant role for patient advocacy in all three.

An activated patient is more health literate, less passive and better able to decide for him- or herself how to use information, treatment options and support systems. On a more personal level, injecting hope for a full recovery and a return to normal life can make a huge difference in patients’ expectations —and, consequently, their behaviors.

The power & practicality of peer support

The question is not whether to provide peer support but how to provide it on a scale that makes it a reasonable and predictable component of the healthcare environment.

Mended Hearts, a 501(c)3 patient advocacy organization, has been providing peer support at the bedside and in cardiac rehabilitation centers for 66 years. Our model is simple and straightforward: A trained, certified peer supporter, who is also an official hospital volunteer, visits patients and their families right before or after their surgeries or during cardiac rehab sessions. The visits are typically 10-15 minutes long, and the dialogue is short and sweet. Patients may ask questions that healthcare providers often don’t have time to answer, such as about the visitors’ experiences, emotional processes and the impact of managing cardiovascular disease on families. Most visits are in-person and are followed up with a phone call.

What these visits create is often profound. Seeing a heart patient, looking healthy, comfortable and living a “regular” life gives the person in the hospital bed something no one else can provide: Hope. 

Hope is a very powerful thing. It’s powerful because it opens patients’ minds up to possibilities. It helps them hear the meaning in what their healthcare providers are saying: You have the power to heal if you participate actively in your own recovery. Take your medicines as prescribed, go to cardiac rehab, make some lifestyle changes, watch for symptoms. Do these things, and you can get your life back.

Picking up the pace

The question is this: How can we scale peer support and create support on demand? 

We think we have at least one answer: Technology. Nearly all of our 200,000 patient visits each year currently occur in person, which is certainly the gold standard for personal interactions. But we believe we can bring the benefits of peer support into the heart journey by offering support-on-demand through social media, online support communities and one-to-one conversations in a plethora of media channels.

We also have begun to organize our 20,000 members into a powerful “voice of the patient,” which can help legislators, regulators and administrators interact with patients on a large scale. It’s a lot of change at a fast pace for a 66-year-old organization, but it’s obviously the right thing to do.

An activated patient is a more successful patient, and that means better outcomes, less expense (for everyone) and ultimately, better quality of life. Who wouldn’t want that prescription? 

Michele Packard-Milam, CAE, is executive director of The Mended Hearts, Inc.