Engaging Patients in Improving Diagnostic Quality

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Clinician reviewing x-rays

Inaccurate or delayed diagnoses are the most common, most catastrophic and most costly of serious medical errors. The National Academy of Medicine believes “improving the diagnostic process is not only possible, but also represents a moral, professional and public health imperative.”

An inaccurate or delayed diagnosis can result in inappropriate treatment, worsen underlying conditions and cause serious harm. Sandra Kaus’ story is an example of these dangers. Her cancerous lump was missed in her first mammogram because a radiologist failed to review her scan due to an administrative error. A year later, when she finally learned of the discovery, the lump had grown, and she was diagnosed with Stage 3 breast cancer. Sandra was told after that first mammogram there was nothing to worry about if she didn’t hear back about the results, but she had trust in a system that failed her. 

Unfortunately, Sandra’s story isn’t unique. Experts estimate that inaccurate or delayed diagnoses in hospitals costs the U.S. healthcare system in excess of $100 billion each year. For example, a delayed sepsis diagnosis can result in longer hospitalization, more expensive care in specialty units, and long-term consequences such as amputation of an affected body part—and there are countless other conditions that can result in a similar situation. An estimated 80,000 premature deaths each year are due to inaccurate or delayed diagnoses. In fact, 74% of inaccurate or delayed diagnoses that result in permanent disability or death are attributable to three disease categories: cancers, vascular events and infections.

Improving diagnostic quality is no easy task and it cannot be done in a silo. Any health system leader aiming to tackle diagnostic quality and safety should look to the people most affected by inaccurate and delayed diagnoses: patients and their families. In a complex and multi-part diagnostic process, the patient, or family members, are the only constant across each conversation, test, clinical assessment and any other interaction with the medical system. Because of this unique vantage point, they should be the cornerstone of any quality improvement effort, to provide important perspectives that professionals entrenched in the system cannot.

In 2019 the Society to Improve Diagnosis in Medicine published a pair of guides that describe the potential role of Patient and Family Advisory Councils (PFAC) in improving diagnostic quality and safety. One was developed specifically for PFAC leaders, helping them build strategies and identify opportunities to partner with hospital and health system leadership. The other guide was developed with hospital and health system leaders in mind. It describes how hospital and health system leadership can work with PFACs and PFAC members to take tangible steps toward reducing diagnostic error. 

The guide for hospital and health system leaders includes direction on how to better understand the current performance of your institution, methods for forming effective team-based solutions, training and capacity-building opportunities for all clinical team members, tools for combatting common and uncommon reasons for inaccurate or delayed diagnosis, and perhaps most logically, plans for better-incorporating PFACs, patients and families into your improvement efforts at systemic and individual levels.

As a result of her experience, Sandra Kaus now volunteers on the hospital system’s PFAC to support patient safety and medical efficiency efforts. She is part of a team that strives to improve quality of care, promote patient advocacy and improve care within the system. While Sandra is now healthy and cancer-free, other patients who experience delayed or inaccurate diagnoses are not so lucky.

All health leaders should strive to partner with patients like Sandra in quality improvement initiatives, but especially diagnosis. They provide a varied and rich experience from which hospital systems can learn and ultimately saves lives.

For more information on diagnostic quality and safety, visit the SIDM website. If you are interested in joining a group of like-minded organizations, learn more about how to join the Coalition to Improve Diagnosis.

Suzanne Schrandt, JD, is senior patient engagement advisor, Society to Improve Diagnosis in Medicine.