Improving Diagnosis of Heart Disease in Women

What follows is an overview of a webinar led by Suz Schrandt, JD, Senior Patient Engagement Advisor, SIDM, and Amy Friedrich-Karnik, Vice President, Advocacy and Communications, WomenHeart. The discussion focused on a convening aimed at improving diagnostic accuracy of heart disease in women.

This webinar was the first in the ACTing to Improve Diagnosis Webinar Series, which showcases innovations and partnerships in diagnostic quality and safety from members of the Coalition to Improve Diagnosis, focusing on the Accuracy, Communication and Timeliness of diagnosis. Sign up to receive notifications about future webinars in the series.

How did the partnership between WomenHeart and the Society to Improve Diagnosis in Medicine (SIDM) come about?

WomenHeart joined the Coalition to Improve Diagnosis in 2018. As Coalition partners, WomenHeart is always looking for ways to work with other Coalition members to improve the diagnosis of heart disease in women.

“Being part of the Coalition has allowed WomenHeart access and exposure to a diverse array of stakeholders, all of whom are working together to address a problem that, especially for women, is all too common,” said Amy Friedrich-Karnik. “We’ve been thrilled to have the experience of being able to work in partnership with so many to address misdiagnosis and diagnostic errors experienced by women with heart disease.”

WomenHeart and SIDM came together in 2020 with a shared goal of advancing research aimed at improving the diagnostic journey for women with heart disease.

With funding from Patient-Centered Outcomes Research Institute (PCORI), WomenHeart and SIDM were able to form a Steering Committee to plan a convening of diverse stakeholders and experts designed to focus on the gaps in awareness and the understanding of heart disease in women, and generate research questions and ideas for promoting better diagnostic outcomes.

Who were the convening participants and how did they engage?

The convening consisted of approximately 50 participants including clinicians, hospitals personnel, researchers, advocates, and women with heart disease along with experts from the Centers for Disease Control and Prevention and the National Institutes of Health.

A diverse group of participants were pulled from an array of fields to provide different perspectives on four focus topics: pregnancy and heart disease, social detriments of health, provider education, and patient/provider communication.
Small groups were created among the participants to focus on the four topics and examined through the population, intervention, comparator, outcome, timing, and setting (PICOTS) framework. Using the PICOTS framework allowed the participants to dive deeper into the specified topic and build out research questions that could lead to possible solutions.

During the convening, what were found to be the contributing factors to diagnostic error?

Participants found three main issues contributing to the missed and delayed diagnosis of heart disease in women: provider-related factors, system-related factors, and various patient challenges.

Using the diagnostic error evaluation and research (DEER) taxonomy, the participants were able to identify at what stages of diagnosis failures occur. Participants found issues in the following areas:

  • Access: patients have symptoms but delay accessing or are unable to access care.
  • History: relevant information is omitted from patient’s history or not captured effectively/correctly.
  • Physical Exam: signs of patient’s heart disease are missed or misinterpreted.
  • Testing: patient is referred for testing but does not/is not able to follow through, appropriate test is not ordered, or results are not communicated.
  • Assessment: patient’s cardiac symptoms are misattributed to another disease, dismissed as unimportant, or blamed on anxiety or stress.
  • Referral/Consultation: patient is referred to specialist but does not/is not able to follow through.
  • Follow-Up: patient does not receive appropriate monitoring for patient condition; provider never learns about the error or delay in the diagnosis.

What were some of the possible research questions that resulted from the convening?

The research questions and ideas generated in the small groups naturally organized into three categories--patients, healthcare providers, and health systems. Research questions included:

Are patients who access information or support from other women with heart disease and/or from patient-centered organizations more likely to be accurately diagnosed or better informed about their diagnosis compared to those who do not access peer support?

Does incorporating data from a registry that track patients’ social determinants of health – e.g., employment status – into clinical decision-making lead to fewer missed diagnoses of heart disease?

Would training that incorporates blinding of patients for diagnostic exams yield greater awareness and appreciation for gender and racial bias?

The hope is that these research questions will provide tangible outcomes to improve the diagnostic process for researchers and others interested in leading, funding, or otherwise engaging in research.

How did the convening benefit participants and how do you hope the results will impact the healthcare community at large?

Participants were able to share knowledge and stories about the challenges women face trying to get an accurate diagnosis of heart disease. WomenHeart and SIDM hope clinician participants continue to draw on these experiences as they provide care and engage with patients. For the broader health community, the goal is to foster solutions centered on women’s experiences and needs. The many patient participants, all of whom are patient Champions for WomenHeart—skilled and powerful advocates—can use the findings from the convening as they continue to spread awareness and seek solutions for this issue.

“We’ve been spending our time simply getting the word out. We really just want to spread the word and get some evidence-based solutions and let everyone know that women’s heart disease does exist,” Amy Friedrich-Karnik expressed in the webinar.

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