A recent report from the Institute of Medicine (IOM), Improving Diagnosis in Healthcare, outlines findings on the state of diagnostic error in our healthcare system.

A follow-up to the 2000 landmark study, To Err Is Human: Building a Safer Health System, this report focuses on a critical area of concern: the impact of diagnostic error on patients and the actions that need to take place if the system is to improve.

According to the study, diagnostic error has not been thoroughly investigated, even though most people will experience at least one diagnostic error in their lifetime. In fact, “a conservative estimate found that five percent of U.S. adults who seek outpatient care each year experiences a diagnostic error.” 1  Even more disconcerting according to the study, “Postmortem examination research spanning decades has shown that diagnostic errors account for 10 percent of patient deaths,” and that “Medical reviews suggest that diagnostic errors account for 6 to 17 percent of hospital adverse events.” 2

The committee found that a broader focus on improving diagnosis is vital to change. They developed a conceptual model to facilitate the improvement of the diagnostic process. This model includes eight goals for improving the process:

  • Facilitate more effective teamwork in the diagnostic process among healthcare professionals, patients and their families
  • Enhance health care professional education and training in the diagnostic process
  • Ensure that health information technologies support patients and health care professionals in the diagnostic process
  • Develop and deploy approaches to identify, learn from and reduce diagnostic erros and near misses in clinical practice
  • Establish a work system and culture that supports the diagnostic process and improvements in diagnostic performance
  • Develop a reporting environment and medical liability system that facilitates improved diagnosis through learning from diagnostic errors and near misses
  • Design a payment and care delivery environment that supports the diagnostic process
  • Provide dedicated funding for research on the diagnostic process and diagnostic errors 3

It has been The Life Raft Group’s observation that GIST is often misdiagnosed, preventing patients from receiving the life saving treatment they need in a timely manner. Once diagnosed, we recommend that GIST patients be treated by a team of medical professionals experienced in the diagnosis and treatment of GIST. For a list of GIST specialists, consult our database.

Collaboration is Key

Key to the process of improving diagnosis is collaboration between health care professionals, patients and caregivers. As the study states, “One strategy is to promote the use of health information technology (health IT) tools that make a patient’s health information more accessible to patients.” 4

Collaboration is also a key component of research. The LRG’s unique Patient Registry provides not only rich information on GIST, but also is now being utilized to support collaborative research with leading GIST experts.

The report comprehensively discusses the diagnostic process, research findings on diagnostic error, and most importantly, recommendations for improving the process and ultimately saving lives.

As with the 2000 study, these findings will prove to have impact on the future of patient care. Until the system improves, the LRG encourages patients and caregivers to continue to be their own advocates for optimal care.

For the full report, click here.


  1. Balogh, Erin P., Miller, Bryan T. and Ball, John R., Editors. Improving Diagnosis in Health Care, Board on Health Care Services, Institute of Medicine, National Academies Press, Washington, DC, 2015, p.1.
  1. Ibid.
  1. Ibid, p.6
  1. Ibid.