Addressing the Disparities Gap in Diagnosis

Patients entering the diagnostic process exhibit several highly visible risk factors—eg, age, race/ethnicity, and sex—that affect efficient and accurate diagnostic decision-making. Yet there have not been focused efforts to understand how these factors impact symptoms, test results, and diagnosis. Consequently, there are no strategies to assure best diagnostic processes and systems supports around cognitive reasoning vulnerabilities or “pitfalls” related to obvious but insufficiently examined patient factors.

When risks related to age, sex or race/ethnicity suggest low likelihood of a particular condition, clinical decision makers may narrow their diagnostic focus too much. This clinical judgment problem is referred to as overweighting of a visible risk factor. Limited systematic research is available to determine the scope of this patient-perceived problem and the circumstances under which it might lead to significant problems in diagnosis.

Media reports, medical malpractice lawyer websites, and peer-reviewed literature suggest two related sources of cognitive reasoning pitfalls: a lack of diagnostic knowledge about symptoms experienced by understudied groups and a lack of understanding about tailoring testing to specific populations, given that medical research has historically been primarily conducted on middle-aged white men.

For example, women are less likely to get accurate results from the traditional treadmill stress test to detect heart problems because the scoring system was derived from experiments on middle-aged men. These contributory factors are referred to as underappreciating knowledge about differences in symptoms or testing. To the extent that the knowledge is available but not aggregated or formatted for practical use, this is a systems level gap in tools and techniques to support patients and clinicians with needed information at the right moment.

At a Patients Improving Research in Diagnosis (PAIRED) meeting hosted by the Society to Improve Diagnosis in Medicine (SIDM), approximately one-third of the patients shared a story of diagnostic error in which they perceived that being too young, female, or African American contributed to not getting a timely and accurate diagnosis for conditions that can cause the most harm such as stroke, colon cancer, sepsis and heart attack.

In response to this clear gap in the system, SIDM has partnered with Stanford University to conduct a first-of-its-kind study of diagnostic disparities due to age, race/ethnicity, and sex. Funded by Coverys, this study aims to identify specific diagnostic error vulnerabilities for young people, women, and African Americans.

SIDM is also partnering with patient members from the PAIRED community to ensure that the research integrates the real-world perspective of patients and family members who have experienced diagnostic error. “This provides the highest level of patient centeredness in our work and addresses the priorities and outcomes that matter most to patients,” says Sue Sheridan, director of patient engagement at SIDM.

“Our goal is to explore how visible factors relate to clinical decision-making, cognitive pitfalls, and systems vulnerabilities in order to enable innovative solution design work,” says Dr. Kathryn McDonald, principal investigator at Stanford University.

The disparities project has four specific aims:

  1. To gather stories in the words of patients and their representatives about how they perceived that one or more of the three visible factors (being female, young adult, or African American) contributed to a diagnostic error where a final accurate diagnosis is known.
  2. To develop a clinical view through literature sources, medical malpractice data, and clinician input as to whether there is a plausible sequence of diagnostic reasoning for each final diagnosis that would include using one more of the visible factors as relevant diagnostic information, and if so, how.
  3. To produce detailed diagnostic scenarios where the visible factors could plausibly contribute through either or both of the posited mechanisms (overweighting and underappreciating) to a cognitive reasoning pitfall.
  4. To co-design with SIDM leadership, researchers, patients, and clinicians a set of solutions that could address the overweighting and/or underappreciating problem described in the diagnostic scenarios, and that could feasibly be implemented in clinical practice settings or incorporated into educational modules for clinicians or patients.

The findings of the two-year study will help healthcare providers improve clinical judgement and help their institutions support prompt and accurate diagnosis by characterizing specific diagnostic error disparities related to clinical reasoning pitfalls. Patient engagement and close partnership throughout the project will help make sure that the results are significant for the ultimate beneficiaries – the patients.

“It is essential that we engage patients and family members with lived experience of diagnostic error to ensure that the research reflects the priorities and outcomes that matter most to patients,” says Sheridan.

Similarly, engaging other stakeholders through SIDM’s leadership on this project will guarantee that project results catalyze further partnerships to understand and reduce diagnostic error disparities.

Learn more about SIDM and Stanford’s study on disparities in diagnosis.