Empowering Women Heart Patients

What follows is an interview with Amy Friedrich-Karnik, Vice President of Advocacy and Communications at WomenHeart.

Why does WomenHeart consider diagnostic improvement to be an important issue?

“WomenHeart was founded in 1999 by three women who had heart attacks and faced many obstacles in their care journey, including misdiagnosis,” said Amy Friedrich-Karnik. “They were not alone; all too often women with heart disease tell stories of being ignored, denied tests, facing biases, and other healthcare experiences that led to missed or delayed diagnosis of heart disease.”

For over twenty years, WomenHeart has been empowering and training women heart patients to be community educators and support network leaders, and it has been lifting up their stories in order to raise awareness of heart disease in women as one way to combat misdiagnosis. These WomenHeart Champions understand the challenges women often face when trying to figure out why they’re not feeling well, and they educate other women about the signs and symptoms of heart disease as well as participate in forums with healthcare providers to share a patient perspective. Read about WomenHeart Champion Lyn Benhke in the Society to Improve Diagnosis (SIDM) Story bank.

“As a patient-centered organization committed to supporting, educating and advocating for women living with or at risk of heart disease, WomenHeart has been addressing misdiagnosis as part of our mission from the beginning,” said Friedrich-Karnik.

What are the barriers to accurate and timely diagnosis for women with heart disease?

“Although heart disease has been known for decades as the number one killer of women, the perception of heart disease as a ‘man’s disease’ has dominated the narrative and has contributed to high rates of misdiagnosis and delay in treatment for women with heart disease,” stated Friedrich-Karnik.

Women are less likely to have non-invasive diagnostic testing at the initial point of care, which has resulted in delayed diagnosis, delayed initiation of therapeutic interventions and ultimately poorer outcomes for many women. Women of color, specifically African American women, tend to experience additional bias, such as trivialization of complaints and lack of respect, that contribute to further delay and misdiagnosis of symptoms. Delay and/or missed diagnosis of heart disease in women may also be due to inadequate clinical training of healthcare providers.

“WomenHeart has partnered with healthcare providers and other experts to ensure that misdiagnosis of heart disease in women is addressed both in research and primary care settings,” said Friedrich-Karnik. “We are excited to be part of SIDM’s Coalition to Improve Diagnosis as yet another platform to raise this issue.”

What tools and resources has WomenHeart developed with diagnostic improvement in mind?

WomenHeart has created various tools and resources to help patients communicate with healthcare providers as they seek a diagnosis and work to understand what it means. These include information on their website and a short video that speak directly to women patients who may be experiencing symptoms of heart disease. They also recently created an infographic that explains the different types on noninvasive cardiac diagnostic tests.

In addition, WomenHeart created an educational module focused on cardiac diagnostic testing. This module is used by WomenHeart Champions who lead support network meetings of women in their community who are living with heart disease. This module provides information about diagnostic testing and is meant to empower patients in conversations and appointments with their doctors.

Tell us about the Patient-Centered Outcomes Research Institute (PCORI) Engagement Award you recently received.

WomenHeart and SIDM received a $100,000 funding award through the Eugene Washington PCORI Engagement Awards program, an initiative of the Patient-Centered Outcomes Research Institute (PCORI).

Over the next year, WomenHeart and SIDM will work together to plan a convening of diverse stakeholders to address misdiagnosis and delay in treatment for women with heart disease and to support the initiation of research intended to improve patient health outcomes and quality of care. WomenHeart and SIDM will assemble a Steering Committee of women with heart disease, cardiologists, nurses, researchers, policy makers, industry and more to lead the planning process.

“We are thrilled to be awarded this funding so we can center women’s experiences as we bring together experts to build a plan for addressing this inequity and, ultimately, improve the care journey for women with or at risk of heart disease,” said Celina Gorre, CEO of WomenHeart, in a recent press release.

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