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Collaborative, patient-partnered research at MHRI aims to help patients and providers understand the impacts of diagnostic errors to limit adverse outcomes.
Recent research finds that diagnostic error—an incorrect or untimely diagnosis—results in about 371,000 deaths and 424,000 permanent disabilities in the U.S. each year, costing the economy nearly $100B annually. Clinicians work daily to prevent errors, and they deserve the support of systems to help identify and limit the likelihood of diagnostic safety events.
That’s why we observe World Patient Safety Day on September 17. This year’s theme, “Engaging patients for patient safety,” recognizes the critical importance of patients, families, and caregivers in making health care safer. Health outcomes, patient satisfaction, and safety all benefit when patients are partners in their care. The slogan “Elevate the voice of patients!” applies to World Patient Safety Day 2023 and our commitment to ensuring diagnostic safety.
MedStar Health Research Institute and the National Center for Human Factors in Healthcare are forging a close collaboration with our patients and other health systems to reduce diagnostic errors, such as:
- Mistakes or delays in diagnosis
- Failure to explain the diagnosis to a patient or caregiver
- Failure to employ indicated tests
- Use of outmoded tests or therapies
- Failure to act on results of monitoring or testing
Diagnosis is a complicated process of assessment, testing, and consultation by providers, sometimes with AI and machine learning assistance. Factors including clinical expertise, ordering and interpretation of tests, electronic medical records, and patient engagement influence accuracy and timeliness.
Our research focuses on the diagnosis process to help ensure every patient gets timely and accurate information communicated in a way they can understand to take appropriate next steps. Working alongside national colleagues and patients with lived experiences in diagnostic error, we aim to help develop solutions that make a difference.
Diagnostic Safety Research at MedStar Health.
The historic focus on reducing diagnostic errors was to define the problem and develop tools to improve care quality, value, patient safety, and experience. Our approach includes the critical role of the patient in identifying and correcting errors in their healthcare.
Prior work at MHRI has demonstrated the value of information from patients and families that is often missing from medical records but is key to informing diagnostic safety. For instance, women and some providers may not know that their heart attack symptoms can be different from men’s. Insight into symptoms beyond classic chest pain could reduce delays in seeking treatment and misdiagnosis.
MedStar Health’s patient-centered, evidence-based approach helps encourage timely, accurate diagnoses by keeping patient and family experience at the core of care and fostering collaboration among providers. One example of this approach is the Patient-Partnered Diagnostic Center of Excellence (PPDCE).
Related reading: Walking the Walk: How MedStar Health Research Leads to Action on Patient Safety.
Researching what matters to patients.
Funded by a $4 million grant from the federal Agency for Healthcare Research and Quality (AHRQ) in late 2022, the PPDCE is a collaboration between MedStar Health, the University of Toronto, Baylor College of Medicine, Michael Garron Hospital (Toronto), and Mothers Against Medical Error. It is governed by experienced patient-partnered scientists and directed by a Steering Committee of leading patient advocates and a Scientific Advisory Panel of experts.
The Center takes a unique approach to studying diagnostic safety through the lens of patient experience by conducting research identified and prioritized by patients. From study design to implementation, we are working hand-in-hand with patients to develop solutions for improving diagnostic safety in four areas:
- Using patient-reported information to identify and learn from diagnostic safety events when they happen.
- Developing a patient-first set of terms and definitions to describe diagnostic safety issues from the patient perspective, especially that of marginalized patients.
- Crafting resources and strategies to improve communication about diagnoses between patients and providers.
- Creating policies and guidelines about equitably engaging patients in work to improve diagnostic safety.
In light of World Patient Safety Day, our research team would like to learn more about what patient involvement in the diagnostic process means to patients, families, and healthcare professionals. A patient survey is now underway to help us gather even more information about experiences with diagnostic failure.
Research estimates of the frequency of diagnostic error likely undercount how often marginalized patients are subject to error. These patients often face additional biases, discrimination, and structural factors underexplored by research. The PPDCE is committed to meaningfully partnering with equity-seeking communities to develop real-world solutions that make a difference for historically marginalized patients.
Through a collaborative research approach that values patients’ lived experience, we intend to empower patients and providers with evidence-based, system-wide strategies for individualized, patient-centered treatment and communication plans that make diagnostic errors less likely.
