Applying the Real-World Wisdom of Patients and Families to Diagnosis

The Problem

According to the National Academy of Medicine, one in every ten diagnoses is wrong and one in every 20 patients will experience a diagnostic error each year. Furthermore, diagnostic errors cause an estimated 40,000-80,000 deaths in the U.S. annually. Not infrequently, symptoms of sepsis are dismissed as “the flu,” incidental findings and important patient information get buried in electronic health records, life-threatening test results are not communicated, and ominous symptoms are overlooked because of biases based on age, race, and gender—all resulting in harm to patients and devastating losses for families.

Progress toward reducing harms from diagnostic error has been frustratingly slow. Awareness of the magnitude and impact of harm from diagnostic error is low in the patient/consumer community and, until recently, diagnostic improvement efforts have been led primarily by researchers, academicians, and policymakers with little input from the “users” of the U.S. healthcare system—the patients.

The Solution

Based on their personal experiences, patients and family members could help fill the remaining gaps in knowledge, education, policy, and practice that lead to breakdowns in the diagnostic process. Their invaluable, real-world “pearls of wisdom” have the potential to help guide much needed improvements in the accuracy and safety of our diagnostic processes. Plus, the patient/family community brings a sense of urgency to this dialogue.

The Society to Improve Diagnosis in Medicine (SIDM), whose mission is “to create a world where no patients are harmed by diagnostic error,” has identified patient and family engagement as a key strategic priority. SIDM incorporates the “human-centered design” engineering approach to problem solving, which “starts with the people you're designing for and ends with new solutions that are tailor-made to suit their needs, preferences, values, and outcomes.” SIDM believes that this approach will lead to more timely, relevant, and patient-centered research, policy, education, and practice improvement strategies that will drive better diagnostic processes and outcomes for patients.

Patient Engagement in Research

To enhance patients’ and families’ productive engagement in improving diagnostic processes, SIDM recently completed its “PAtients Improving REsearch in Diagnosis” (PAIRED) project. Funded by a Eugene Washington Award from PCORI, PAIRED brought patient leaders who had experienced diagnostic errors together with expert research mentors to integrate the patient perspective into research efforts to improve diagnostic processes. The project developed and evaluated an innovative curriculum to train Patient Partners to participate in the design, execution, and dissemination of research to improve diagnostic processes.

As a result of this training and collaboration, the patients and research mentors identified key research topics that mattered most to the patient community. Specifically, the patients identified the importance of researching the impact of age, race, and gender bias on missed and delayed diagnosis, biases that had personally affected some of the patients and family members. Based on this theme, SIDM is now conducting a two-year, funded research project entitled “Exploring and Addressing Diagnostic Error Disparities Related to Cognitive Reasoning Pitfalls,” in which some of the PAIRED patients are serving as advisors to a PAIRED research mentor.

The PAIRED project also identified a gap in many researchers’ knowledge and skills regarding methods for conducting patient-centered research in diagnostic safety, an approach that was unfamiliar to many traditionally trained researchers. This discovery led to a second PCORI award to SIDM to host a Diagnostic Researcher Workshop at the DEM2019 conference.

These early positive results from collaboration among PAIRED patients, family members, and research experts are very encouraging:

• A new curriculum was developed to enable more patients to engage in diagnostic research as partners.
• Relevant, patient-centered research topics were identified.
• An activated patient/researcher community was created.
• New funding opportunities emerged.

Patient Engagement in the Future

Building on lessons learned from the successful collaborations of the PAIRED project, SIDM now plans to engage and build capacity with patients and other stakeholders in SIDM’s other strategic priority areas including:

1. Medical Education- to prepare patients to participate in the co-creation and co-delivery of medical education, leveraging the ACCME’s new “patient engagement” criterion for accreditation and the AMEE’s new global theme, “Patients as Educators.”
2. Advocacy/Policy - to acquaint patients with the structure and processes of health care policymaking and equip them with skills needed for effective advocacy on Capitol Hill and for making public comments and participating on federal panels and advisory committees.
3. Practice Improvement - to help train patient advisors and Patient and Family Advisory Councils (PFACs) to be change engines for diagnostic improvement efforts within healthcare systems.

Conclusion

The process of diagnosis is complex, with many layers, players, and systems that can result in significant patient harm and death. The solution will require an innovative, collaborative approach that engages the patient and family community, and other key stakeholders as problem solvers together.

SIDM has incorporated this approach by engaging and training patients and family members as well as leading experts in a research effort to improve diagnosis that, to date, has had encouraging results.

Going forward, SIDM is committed to this approach in future research, medical education, practice improvement, and policymaking efforts. We encourage others who are committed to improving diagnosis and incorporating the real-world wisdom of the patient community as collaborative problem solvers. That will help ensure that sepsis is diagnosed accurately; incidental findings and life-threatening test results are communicated in a timely, understandable manner; ominous symptoms are acted upon rather than misinterpreted due to biases; and patients and family members are safe from harm from diagnostic error.