Engaging in Research

Patient-Centered Research to Improve Diagnosis of Heart Disease in Women

A new report from two organizations that support patient engagement reflects discussions that took place during a virtual day-long meeting devoted to improving the diagnosis of heart disease in women.

Although traditionally considered a “man’s disease,” heart disease is common among women. It is, however, often misdiagnosed, undertreated or dismissed as a psychosomatic manifestation of lesser complaints. Heart disease is, in fact, the leading cause of death for women in the U.S., responsible for more than 400,00 deaths each year.

The nature and degree of misdiagnosis of heart disease in women has been studied and is fairly well understood, but there has been very little research focused on solutions. Two organizations — WomenHeart and the Society to Improve Diagnosis in Medicine (SIDM) – came together in 2020 to prompt and encourage patient-centered research about ways to improve diagnosis of heart disease in women and ultimately improve care and outcomes.

With funding from the Patient Centered Outcomes Research Institute, WomenHeart and SIDM established a Steering Committee to help plan a day-long convening to advance solutions-focused research. A report covering the proceedings and results of the convening was published last month and is available on WomenHeart’s website, as well as an Executive Summary and Environmental Scan of the literature and resources that was done in preparation for the convening. (Disclosure… I attended the convening and was involved in writing the two publications.)

The report begins with a detailed exploration of challenges women face in the diagnostic process for heart disease. The report also summarizes presentations given by experts from Mayo Clinic, Cleveland Clinic, medical schools at Johns Hopkins and Tulane University, the Indian Health Council, and other organizations to establish shared knowledge about the problem. Throughout the day, WomenHeart Champions – women with heart disease who are trained to provide peer support and community education — presented their stories and participated in panel discussions and small group sessions.

Held in the afternoon, the small group sessions were facilitated around three questions designed to help guide discussion toward solution-focused research:

  1. What specific issues, if solved or improved, would lead to substantial improvement in health/health care quality and outcomes for women?
  2. What interventions could be tested to try to solve these issues?
  3. What outcomes (that are meaningful to patients) could be measured to determine improvement?

Brainstorming in these sessions produced extensive lists of possible research questions, which might translate directly into studies or prompt further exploration of similar interventions.

The report offers supplemental materials, including an explanation of a framework for developing patient-centered outcomes research that helped shape the small-group discussions and is a good resource for understanding this approach to research.

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Susan Carr Susan Carr is a medical editor and writer specializing in patient safety and engagement. In addition to curating the EngagingPatients blog, she produces publications for the Betsy Lehman Center in Boston and the Society to Improve Diagnosis in Medicine. Susan lives and works in Lunenburg, Massachusetts.

Susan Carr has 134 post(s) at EngagingPatients.org

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