Patient Voices Make a Difference

Last June, more than 40 congressional staffers assembled at a briefing on Capitol Hill to listen to heartbreaking stories from three people whose lives were drastically changed as a result of diagnostic errors. Sue Sheridan, director of patient engagement at the Society to Improve Diagnosis in Medicine (SIDM), shared the story of her late husband, Pat, whose untimely death was caused by a failure to communicate the results of a pathology report that showed a malignant tumor. Ciaran Staunton spoke about his young son, Rory, whose scraped arm and strange symptoms quickly turned into sepsis, which was not diagnosed quickly enough to save him. Mick Night told the story of his son, John Michael, who suffered a stroke that left him permanently unable to speak or move his limbs, a condition which could have been prevented with timely diagnosis and administration of a one-cent aspirin.

While there were many speakers at the event, the personal stories of harm and the toll taken on these families showcased for attendees the imperative to do all we can to improve the diagnostic process.

All three families, touched by diagnostic error, came together to share their stories and advocate for increased research funding in diagnostic quality and safety. For Sue, Ciaran, and Mick, the stories were difficult to share, but they were connected and inspired by a desire to make sure the errors that impacted their families do not happen again.

As psychologist Julian Rappaport explains, “people who seek either personal or community change often find that it is very difficult to sustain change without the support of a collectivity that provides a new communal narrative.” Stories elevate the work that we do; they are an essential tool in any social movement. At the core of SIDM’s mission is the need to incorporate patients not only as storytellers, but also as active participants in the diagnostic process and partners in research, policymaking, education and quality improvement.

With this in mind, SIDM showcases families who have been harmed by missed or delayed diagnosis through an online story bank. These stories span the spectrum of diagnostic errors in medicine and underscore the fact that these errors happen to men, women, children, seniors—all people, regardless of race or socioeconomic status. The stories that families are willing to share cover different types of breakdowns in the diagnostic process, such as delays in diagnostic testing, incomplete history-taking, communication failures, and cognitive biases. The stories also demonstrate that diagnostic errors can involve any disease or chronic condition, from sepsis to lung cancer, missed stroke, and Lyme disease.

The SIDM Story bank ensures the voices of patients and their families inform diagnostic improvement efforts and brings the magnitude of the issue to life. SIDM seeks to highlight stories that illustrate the physical and emotional harm caused by preventable errors during the diagnostic process. Dr. Rappaport notes that “the goals of empowerment are enhanced when people discover, or create and give voice to, a collective narrative that sustains their own personal story in positive ways.” Many of the individuals profiled in the story bank have become advocates themselves, participating in Patient Family Advisory Councils, joining SIDM Patient Partners, and working on behalf of organizations promoting improved diagnosis in a specific condition.

In addition to using patient stories to highlight the need to improve diagnosis, it is also imperative to include patients and families as active partners in program design, implementation, and evaluation.

Together with patients, SIDM hopes to find solutions that increase diagnostic accuracy and timeliness and ultimately ensure the best possible health outcomes for patients.

Tell Us Your Story

Have you or someone you love been affected by diagnostic error? By sharing your story, you help ensure the voices of patients and their families are heard in diagnostic improvement efforts.

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