Using Patient Input to Improve Diagnostic Safety
Sigall K Bell, M.D.
Associate Professor of Medicine
Beth Israel Deaconess Medical Center, Harvard Medical School
“AHRQ is helping to pioneer a novel 360-degree approach to diagnostic error prevention by bringing patients and families directly into the discussion, so we can more effectively recognize their unique knowledge, and better detect, track, and address the kinds of diagnostic breakdowns they’re experiencing.”
Efforts to identify the nature of diagnostic errors and how to prevent them have come a long way in just the past decade. On the heels of a 2015 National Academy of Medicine report (PDF, 424 KB) that found most Americans will experience either a delayed or inaccurate diagnosis in their lifetime, innovative research is changing how clinicians understand diagnostic errors.
Among the leaders in this endeavor is AHRQ-funded researcher Sigall K. Bell, M.D., associate professor of medicine at Harvard Medical School and Beth Israel Deaconess Medical Center in Boston, who is creating a shared language that encourages patients and families to engage with clinicians in improving diagnostic safety using terms that reflect patients’ experiences. “The traditional tools and measures to identify diagnostic errors were developed and used by clinicians,” she said. “But patients and families describe diagnostic breakdowns using different words and concepts, including some that might not be detected by conventional methods.”
Dr. Bell’s research demonstrates that inviting patients to review visit notes following an ambulatory appointment (i.e. Open Notes) can help improve the diagnostic process, by helping them better remember next steps, including tests and referrals, and build stronger relationships with their clinicians. Adding further momentum to the role of patient engagement is the recent implementation of the 21st Century Cures Act Final Rule, which guarantees patients free access to the health information in their electronic health records (EHRs).
Diagnostic errors occur in part because diagnosis itself is a multi-layered process, potentially involving a lengthy exchange of patient symptoms and history, clinical reasoning, lab orders and results, and other elements. Documentation errors occur frequently, with about one in five patients reporting a perceived serious mistake following a review of their post-visit notes, as reported in a study by Dr. Bell in JAMA Network Open.
“Patients and clinicians have a shared vested interest in getting to the right diagnosis,” Dr. Bell said. “But what we’ve learned from our research is that there are many ways that can go off course, and many ways that patients and families can uniquely contribute information to keep the process on track.”
During a visit, for example, a clinician might misinterpret the significance of a new or changing symptom—such as pain or poor sleep—reported by the patient. These types of “misalignments,” may be subtle but “can actually derail the diagnostic process,” she said. “Patients who reviewed notes could identify such gaps. We’re starting to zoom in on uncovering these contributions earlier in the process so there’s a corrective mechanism that’s possible before it leads to duplication, diagnostic error, or harm. That’s the ultimate goal.”
Dr. Bell’s AHRQ-funded work draws from the input of patients who are able to view and contribute to provide feedback on their visit notes. These contributions have helped her and her collaborators create a patient-centered framework to understand more precisely where and how often diagnostic breakdowns take place.
With input from patients, families, clinicians, and experts in diagnostic safety, Dr. Bell and her team developed and tested the framework for patient-reported diagnostic breakdowns that occur in ambulatory care settings. After analyzing more than 2,000 patient-reported errors from 25,000 respondents, researchers identified several major categories of breakdowns potentially associated with a delayed or inaccurate diagnosis.
Prominent concerns included missed or erroneous elements of the patient’s medical history; missed or delayed test results or referrals; and problematic communication, including not feeling heard, or a perceived lack of respect. Among patients who reported a diagnostic error, the most common contributing factor patients reported was that they didn’t feel listened to by providers, Dr. Bell observed. “This opens up an important door in terms of targeted interventions: how do we begin to capture this phenomenon? Clinicians may not know that patients don’t feel listened to unless they ask.”
The second part of Dr. Bell’s AHRQ-funded project aims to make it easier for clinicians and healthcare organizations to actively partner with patients and families in the diagnostic process by inviting their contributions before the visit, using existing EHR functionality.
Drawing on data from the framework of patient-reported breakdowns, Dr. Bell and her colleagues worked with patients, clinicians, and user-design experts to design a new tool named Our Diagnosis (OurDX). It encourages patients to read their notes and creates a dedicated space in patients’ medical records to gather patients’ contributions, including their visit priorities, recent history, and any concerns they have about potential breakdowns in the diagnostic process.
She is hopeful that OurDX, which will be made available for free, will encourage healthcare organizations to pursue projects to reduce diagnostic errors working with patients and families. “The tool design is simple and shelf-ready for implementation through an organization’s existing EHR, which makes it easy to expand the work of OurDX going forward, although we still need to learn more,” Dr. Bell said. Analysis of its use is currently being tested at two sites, with nearly 7,500 reports thus far. The project is expected to conclude in late 2022.
Extending the AHRQ-funded work that helped create OurDX, Dr. Bell and her colleagues at Boston Children’s Hospital have examined the impact of the tool to engage patients with limited English proficiency in the diagnostic process. Funded by the Society to Improve Diagnosis in Medicine, this study found that patients and families who preferred a language other than English were more likely to report that they didn’t feel heard or report a problem or delay with tests or referrals. Researchers hope that OurDX will enable clinicians “to pick up on those vulnerabilities at the point of care,” she said.
As the field of diagnostic safety continues to mature, Dr. Bell credits AHRQ with having the foresight to fund research at the intersection of health information transparency, patient and family engagement, and improving diagnostic safety in ambulatory settings.
“It reflects on AHRQ’s vision to take such a pioneering stance on tackling the complex issue of ambulatory diagnostic error in a new and innovative way,” she said. “AHRQ is helping to shape a novel 360-degree approach to diagnostic safety by bringing patients and families directly into the discussion, so we can more effectively recognize their unique knowledge, and better detect, track, and address the kinds of breakdowns they’re experiencing.”
Dr. Bell is director of Patient Safety and Discovery at Open Notes, the project that invites patients to access to their visit notes at Beth Israel Deaconess Medical Center. In addition to her academic appointment at Harvard Medical School, she serves as the co-director of research at the Collaborative for Accountability and Improvement and was a former recipient of the Arnold P. Gold Professorship for humanism in medicine. The Open Notes team has been recognized with the John Q. Sherman award for patient engagement and the AcademyHealth Data Liberator award.
Principal Investigator: Sigall K Bell, M.D.
Institution: Beth Israel Deaconess Medical Center, Boston, MA
Grantee Since: 2019
Type of Grant: Research Project (R01)
Related AHRQ Resources:
Consistent with its mission, AHRQ provides a broad range of extramural research grants and contracts, research training, conference grants, and intramural research activities. AHRQ is committed to fostering the next generation of health services researchers who can focus on some of the most important challenges facing our Nation's health care system.
To learn more about AHRQ's Research Education and Training Programs, please visit https://www.ahrq.gov/training.
