Diagnostic Error Disparities
By Gina Michiko Craig
What does a holistic examination of diagnostic error disparities look like? Medical researchers from The Society to Improve Diagnosis in Medicine (SIDM) and Johns Hopkins University pondered this question themselves. These researchers then initiated and spearheaded a research study to examine and attack the problem head-on.
Major Problems With Diagnostic Error Disparities
It’s no surprise that diagnostic errors occur in medicine. There are a wide variety of medical conditions and issues that may go awry in the human body, and medical research reflects this fact. And with so many things that can go wrong, the rate of misdiagnosis shows that one in 10 patients with what’s referred to as the “Big Three” will encounter a misdiagnosis. These “Big Three” include the three categories of cancers, infections, or major vascular events. The compounding of the percentage of errors must be addressed in order to decrease the corresponding permanent disabilities or deaths from these diagnostic errors. Lead study author Dr. David Newman-Toker, director of the Armstrong Institute Center for Diagnostic Excellence at Johns Hopkins, noted, “Misdiagnoses can have catastrophic effects, leaving patients and their families picking up the pieces after a death or permanent disability.” Although more rare medical conditions have a higher rate of misdiagnosis, the study researchers decided to examine issues with cancers, infections, and major vascular events. In fact, the researchers noted that the misdiagnosis rates of the “Big Three” have not improved over the past several decades.
The ”Big Three” misdiagnosis rates are just one aspect of issues in diagnostic errors, however. The Society to Improve Diagnosis in Medicine also partnered with Stanford University to lead a study on the hypothesis that patients being Black, female, or too young contributed to a delay in medical diagnosis or a misdiagnosis. When the factors of age, race/ethnicity, or sex are given a low risk and indicate a low likelihood of a particular condition, clinical decision makers may contract their diagnostic focus too much. This issue in clinical judgment is called overweighting of a visible risk factor.This overweighting is largely attributed to past clinical research being primarily carried out on middle-aged white men.
Solutions Toward Decreasing Diagnostic Error Disparities
The Society to Improve Diagnosis in Medicine recognizes the issues with diagnostic error disparities and is taking charge to lead the way toward solutions. “The process of making a diagnosis involves a team of healthcare professionals and the patients they serve, so you need all stakeholders collaborating to move the needle on quality and safety,” said CEO and Co-Founder Paul Epner. “We’re bringing together organizations from every corner of healthcare to leverage their insights and experiences to implement real solutions that result in tangible improvements.”
The SIDM study with principal investigator Dr. Kathy McDonald, from Johns Hopkins University and formerly of Stanford University, examined all aspects and groups that are involved in patient care. The researchers consulted with a human-centered design expert with a focus on equity, and they took their newly obtained knowledge to start building solutions for diagnostic error disparities. Potential solutions were categorized and emphasized the need for various types of expertise: educators, multidisciplinary researchers, healthcare systems, and health IT experts – all working in partnership with patients. Some issues that recurred throughout the project included racism, inequality, power differentials and hierarchies, the digital divide, historic mistrust, and social determinants of health.
The study researchers analyzed the diagnostic error disparity issues and created six solutions for developing solutions. The solutions included:
Ensuring equity, such that the solutions to address existing diagnostic disparities do not exacerbate or create new disparities.
Treating bias as an inherent but addressable phenomenon.
Incorporating patient-centeredness (the concept that patients are unique and have a critical role to play in their diagnosis)
Supporting patient empowerment (the work of overcoming asymmetry of knowledge and power, and of harnessing the importance of one’s own lived experience) at all levels.
Emphasizing the importance of engendering patient trust, and acknowledging how this process may be different within different subpopulations.
Embracing patient engagement throughout the process of solving diagnostic disparities, including positioning patients to lead change and engagement of others to join in it.
Medical laboratory scientist Dr. Dana Powell Baker shared her perspective about diagnostic testing and working toward solutions. “Because there's a lot that happens if you look across all three phases of testing, whether it's pre-analytical, analytical, post-analytical. And so, when we look at standardization and harmonization, it's really crucial just to have that fundamental understanding of our roles, having clarity in that, having understanding of the testing methodologies that are not being used in our facility, but what are the testing methodology being employed by our regional facilities and even beyond that, and that's where even education beyond the classroom, in our national meetings and national conferences, where we're able to network and hear presentations that also connect with others from other regions or within our region, about the testing methodologies that they're using.”
Diagnostic errors and diagnostic disparities continue to cause major issues that can result in misdiagnosis, disability, and death. With health equity gaining increased visibility, healthcare stakeholders in different parts of the patient experience can make efforts to reduce errors and disparities. Holistic studies like the one carried out by the Society to Improve Diagnosis in Medicine and Johns Hopkins Medicine provide valuable insight that can be utilized to help lead the way toward change and health equity for all.
What can you do next?
Advocate for yourself and others. Be sure to share your concerns and opinions. Write to your congressperson to ask for federal funding to support diverse representation in diagnostic testing.
Build community and support toward equity in diagnostic testing. Look for online forums discussing equity in diagnostics. Ask your healthcare provider for other ways to find people working to create AI diagnostic tools with diverse patient groups.
Lead. If you are a healthcare provider, examine how you currently engage with your patients. Consider joining our Pro Hub to connect with other experts committed to removing barriers to health equity.
Sources
Addressing the Disparities Gap in Diagnosis. The Society to Improve Diagnosis in Medicine website. Accessed October 17, 2024. https://www.improvediagnosis.org/improvedx-july-2019/addressing-the-disparities-gap-in-diagnosis/
Exploring and Addressing Diagnostic Error Disparities Related to Cognitive Reasoning Pitfalls. The Society to Improve Diagnosis in Medicine, Johns Hopkins Medicine. The Society to Improve Diagnosis in Medicine website. Accessed October 17, 2024. https://www.improvediagnosis.org/wp-content/uploads/2022/11/Exploring-and-Addressing-Diagnostic-Error-Disparities-July-2021.pdf
One in 10 Patients With a ‘Big Three’ Disease Misdiagnosed. The Society to Improve Diagnosis in Medicine website. Accessed October 17, 2024. https://www.improvediagnosis.org/news_posts/one-in-10-patients-with-a-big-three-disease-misdiagnosed/
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