A Convening to Address Missed and Delayed Diagnosis of Heart Disease in Women

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Heart disease continues to represent a major threat to women’s health. One in four female deaths can be attributed to heart disease, killing nearly 300,000 women every year. Although heart disease has been known to be women’s number one killer for decades, the perceptions of heart disease as a “man’s disease” has dominated the narrative and caused misdiagnosis and delay in treatment for women with heart disease. WomenHeart: The National Coalition for Women with Heart Disease, in partnership with the Society to Improve Diagnosis in Medicine (SIDM), aims to address this gap in knowledge and support the initiation of comparative effectiveness research (CER) and patient-centered outcomes research (PCOR) to develop improved healthcare practices that will ultimately improve patient health outcomes and quality of care. WomenHeart’s partnership with SIDM will ensure a broad range of engagement to bring together stakeholders to understand “how CER/PCOR research can help to improve missed and delayed diagnosis of heart disease in women.”

Objectives:

• Engage stakeholders to develop a list of gaps in research, including PCOR/CER, and deficiencies in medical training that contribute to missed or delayed diagnosis of heart disease in women
• Develop strategic recommendations to fill in gaps and deficiencies in healthcare practices, diagnosis, and treatment of women with or at risk of heart disease.

Activities: WomenHeart and SIDM will host a convening of stakeholder groups, including women with heart disease, cardiologists, nurses and other providers, researchers, industry, hospitals with women’s heart centers, federal policy makers, professional societies, CMS, and other payers and purchasers. WomenHeart and SIDM will also disseminate the strategic recommendations of the meeting, through a white paper, to targeted stakeholder groups.

Outcomes: Projected outcomes include advancement of the body of knowledge on missed and delayed diagnosis of heart disease in women and increasing interest in CER/PCOR to improve patient outcomes and address missed and delayed diagnosis of heart disease in women.

Patient and Stakeholder Engagement Plan: WomenHeart and SIDM plan to engage a wide variety of stakeholders in the planning, execution, and evaluation of the project. These stakeholder groups include women with heart disease, cardiologists, nurses and other providers, researchers, industry, hospitals with women’s heart centers, federal policy makers, professional societies, CMS, and other payers and purchasers. In addition, a steering committee of stakeholders will be engaged routinely to shape and build the agenda and participant list.

Project Collaborators: WomenHeart will subcontract with SIDM to create a collaborative relationship of partnership and ensure across-network engagement in each phase of the project implementation. This subcontract will allow the project to leverage SIDM’s expertise with convening multi-stakeholder partners to address issues of healthcare delay and diagnosis error—ultimately to improve care for women living with or at risk of heart disease. SIDM will act as co-collaborators with WomenHeart to identify and select the steering committee, provide support to the steering community, coordinate the in-person convening, and facilitate development and dissemination of the meeting white paper. This joint partnership will facilitate broader reach and engagement with a variety of stakeholders that would benefit each organization.