DIAGNOSTIC SAFETY

PFPS US in action to improve

Diagnostic Safety and Quality

A recent report estimates that 795,000 Americans become permanently disabled or die annually across care settings because dangerous diseases are misdiagnosed. PFPS US is committed to reducing harm from diagnostic errors and has launched a variety of activities to address this sobering data.

New Patient Video on Diagnostic Errors:

"What If?"

Improving Diagnosis for Patient Safety through Patient Stories

English Version

Spanish Version

What is a Diagnostic Error?

The National Academies of Sciences, Engineering, and Medicine defined diagnostic error as the failure to (a) establish an accurate and timely explanation of the patient’s health problem(s) or (b) communicate that explanation to the patient.


Simply put, these diagnoses are delayed, wrong, or missed altogether.


These categories overlap, but examples help illustrate some differences:


  • A delayed diagnosis is a case where the diagnosis should have been made earlier. Delayed diagnosis of cancer is by far the leading entity in this category. A major problem is that there are very few good guidelines for making a timely diagnosis, and many illnesses aren’t suspected until symptoms persist, or worsen.
  • A wrong diagnosis occurs, for example, if a patient truly having a heart attack is told their pain is from acid indigestion. The original diagnosis is found to be incorrect because the true cause is discovered later.
  • A missed diagnosis refers to a patient whose medical complaints are never explained. Many patients with chronic fatigue, or chronic pain fall into this category, as well as patients with more specific complaints that are never accurately diagnosed.

PFPS US Activities

Building Community

  • Established a skilled corps of “Champions” with patients, family members, patient organizations, and networks from across the country that represent thousands of diverse individuals, many of whom have personal experience with diagnostic errors. Many have testified at the state and national levels, co-written bi-partisan bills, and have been featured in national media
  • Developed a dedicated page of patient stories related to diagnostic safety

Advocacy and Awareness Raising


Participated in Hill briefings and coordinated Hill visits:

  • To raise awareness about the magnitude of harm from diagnostic and patient safety events 
  • Call for the adoption of the Improving Diagnosis in Medicine Act and other actions by HHS agencies.
  • Organized three World Patient Safety Day marches to the US Capitol
  • Coordinated national campaigns to mobilize diverse patients and patient and consumer organizations to participate in HHS public comment in support of federal rule-making related to patient and diagnostic safety
  • Organize and participate in webinars and podcasts related to diagnostic safety

Thought Leadership


Partnering in Research


  • Participates in 3 AHRQ Grants on Diagnostic Excellence:
  • Achieving Better Cancer Diagnosis (ABCD): Identifying, Supporting and Learning From Marginalized Patients Who Experience Delayed Cancer Diagnosis (Harvard Medical School for Primary Care)
  • Safety-II Together: Coupling Teaming Science with Patient Engagement and Health (University of Texas/Harvard Medical School)
  • The Patient-Partnered Diagnostic Center of Excellence (MedStar)  
  • Participated in the American Academy of Pediatrics and Council of Medical Specialty Societies grant: Improving Diagnostic Excellence in Ambulatory Pediatrics: The Pediatric Quality Minute Series

Advancing Patient-Reported Measures


  • Launched a project called Project PIVOT to advance patient-reported experience measures related to inaccurate and delayed diagnosis  for inclusion into  patient-centered outcomes research (PCOR), quality improvement, and national patient experience surveys such as HCAHPS

Diagnostic Safety and Quality

Resources & Toolkits

Martin J. Hatlie

Martin J. Hatlie

mhatlie@pfps.us

Carole Hemmelgarn

Carole Hemmelgarn

chemmelgarn@pfps.us

Armando Nahum

Armando Nahum

anahum@pfps.us

Sue Sheridan

Sue Sheridan

ssheridan@pfps.us

Beth Daley Ullem

Beth Daley Ullem

bdullem@pfps.us

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