Answer the Call to Engage Patients and Families in the Diagnostic Process: A New Patient-Centered Approach Using Health Information Transparency to Identify Diagnostic Breakdowns in Ambulatory Care

Citation:
Bell SK, Harcourt K, Dong J, DesRoches C, Hart NJ, Liu SK, Ngo L, Thomas EJ, Bourgeois FC. Patient and family contributions to improve the diagnostic process through the OurDX electronic health record tool: a mixed method analysis. BMJ Qual Saf. 2023 Aug 21:bmjqs-2022-015793. doi: 10.1136/bmjqs-2022-015793. Epub ahead of print. PMID: 37604678; PMCID: PMC10879445.

Summary:
This study aimed to explore patient and family contributions through an online tool, "OurDX," co-developed to improve diagnostic information sharing between patients, families, and clinicians. Implemented at two academic organizations serving patients with chronic conditions, patients and families were invited to submit their visit priorities, medical histories, and potential diagnostic concerns prior to appointments. Analysis of 7,075 reports from pediatric subspecialty visits and 460 reports from adult primary care visits revealed that patients/families most commonly contributed information about clinical symptoms, tests/referrals, and diagnosis/next steps. Those with diagnostic concerns were more likely to highlight risks such as access barriers, care coordination issues, and communication breakdowns, which could indicate diagnostic blindspots. The findings suggest that engaging patients and families through tools like OurDX can provide clinicians with a broader perspective, enhancing diagnostic safety by incorporating unique insights into the diagnostic process.

Citation:
Liu SK, Bourgeois F, Dong J, Harcourt K, Lowe E, Salmi L, Thomas EJ, Riblet N, Bell SK. What's going well: a qualitative analysis of positive patient and family feedback in the context of the diagnostic process. Diagnosis (Berl). 2023 Dec 20;11(1):63-72. doi: 10.1515/dx-2023-0075. PMID: 38114888;PMCID:PMC10875277.

Summary:
This study explores patient and family feedback on positive aspects of the diagnostic process (DxP) to identify elements of a "good" DxP. Using an online pre-visit survey conducted from December 2020 to March 2022, patients and families from three urban pediatric subspecialty clinics and one rural adult primary care clinic shared their perspectives. Among 7,535 completed surveys, 1,578 participants provided positive feedback, with qualitative analysis of 272 longer comments revealing three key themes: Relationships (60%), Clinical Care (36%), and Environment (4%). Within Relationships, patients/families emphasized thorough and competent attention, clear communication, and emotional support, while Clinical Care feedback highlighted timeliness, effective management, and care coordination. The findings underscore the critical role of strong patient-clinician relationships in fostering effective and satisfying diagnostic experiences, advocating for relationship-centered care in the DxP.

Citation:
Bell SK, Dong J, Ngo L, McGaffigan P, Thomas EJ, Bourgeois F. Diagnostic error experiences of patients and families with limited English-language health literacy or disadvantaged socioeconomic position in a cross-sectional US population-based survey. BMJ Qual Saf. 2023 Nov;32(11):644-654. doi: 10.1136/bmjqs-2021-013937. Epub 2022 Feb 4. PMID: 35121653.

Summary:
This study examines how individuals with limited English-language health literacy (LEHL) or disadvantaged socioeconomic position (dSEP) experience diagnostic errors, contributing factors, and impacts compared to their counterparts. Using data from the 2017 Institute for Healthcare Improvement U.S. population-based survey, researchers analyzed 596 self-reported diagnostic errors, including 381 from respondents with LEHL/dSEP, employing contingency analysis and multivariable logistic regression. LEHL/dSEP respondents were significantly more likely to report barriers such as lack of qualified translators, difficulty understanding follow-up plans, fragmented care coordination, inability to afford medical care, and outdated or incorrect medical records. These individuals also experienced disproportionate long-term emotional, financial, and relational impacts. The findings highlight the urgent need to improve interpreter access, address social determinants affecting care, and encourage patient engagement with medical records to enhance diagnostic safety and equity.

Citation:
Bourgeois FC, Hart NJ, Dong Z, Ngo LH, DesRoches CM, Thomas EJ, Bell SK. Partnering with Patients and Families to Improve Diagnostic Safety through the OurDX Tool: Effects of Race, Ethnicity, and Language Preference. Appl Clin Inform. 2023 Oct;14(5):903-912. doi: 10.1055/s-0043-1776055. Epub 2023 Nov 15. PMID: 37967936; PMCID: PMC10651368.

Summary:
This study investigates how race, ethnicity, and language preference influence patient and family contributions and concerns in the diagnostic process (DxP) using an electronic previsit tool. Conducted at an urban pediatric hospital, 5,731 patients and families completed the tool, sharing visit priorities, recent histories, and potential diagnostic concerns. Logistic regression revealed that patients identifying as Black or "other" race and those preferring a language other than English were 1.5 to 2.5 times more likely to report diagnostic concerns compared to their counterparts. Chart review showed no significant differences in physician-verified concerns or integration of contributions into visit notes based on race, ethnicity, or language preference. These findings suggest that proactively engaging patients and families in the DxP can surface diagnostic concerns, offering opportunities to address potential safety disparities and reduce diagnostic errors.

Citation:
Bell SK, Dong ZJ, Desroches CM, Hart N, Liu S, Mahon B, Ngo LH, Thomas EJ, Bourgeois F. Partnering with patients and families living with chronic conditions to coproduce diagnostic safety through OurDX: a previsit online engagement tool. J Am Med Inform Assoc. 2023 Mar 16;30(4):692-702. doi: 10.1093/jamia/ocad003. PMID: 36692204; PMCID: PMC10018262.

Summary:
This study aimed to evaluate a new online tool, "OurDX," designed to engage patients and families with chronic health conditions in diagnostic safety by capturing their diagnostic concerns, visit priorities, and recent medical histories. At two U.S. healthcare sites, patients and families completed previsit surveys via OurDX, and two physicians reviewed reported diagnostic concerns to verify and categorize diagnostic safety opportunities (DSOs). Among 7075 pediatric subspecialty visits and 460 adult primary care visits where OurDX was used, 63% of patient-reported concerns were verified as DSOs, identified in 7.5% of cases overall. Common DSOs included patients feeling unheard, delays in tests or referrals, and problems with explanations or next steps. Most clinician notes reflected some or all of the patient-reported priorities and histories, demonstrating the tool's effectiveness in incorporating patient input into the diagnostic process. These findings suggest that OurDX can facilitate patient engagement and enhance diagnostic safety for those with chronic conditions.

Citation:
Bell SK, Bourgeois F, Dong J, Gillespie A, Ngo LH, Reader TW, Thomas EJ, Desroches CM. Patient Identification of Diagnostic Safety Blindspots and Participation in "Good Catches" Through Shared Visit Notes. Milbank Q. 2022 Dec;100(4):1121-1165. doi: 10.1111/1468-0009.12593. Epub 2022 Dec 20. PMID: 36539389; PMCID: PMC9836247.

Summary:
This study investigates whether sharing clinical notes with patients can support the identification of "diagnostic safety blindspots"—potentially consequential breakdowns in the diagnostic process that clinicians may overlook. Using mixed methods, we analyzed patient-reported documentation errors from 22,889 patients across three U.S. healthcare centers who accessed at least one visit note. Of the 962 blindspots reported by 774 patients, 43.8% involved diagnostic misalignments, 38.1% were errors of omission, 14.3% occurred outside visits, and 3.7% were cascading issues. Many patients acted on identified blindspots, leading to "good catches" that prevented harm. Older, sicker, female, and healthcare-employed patients were more likely to report blindspots, while those with less education, racial minorities, and individuals deferring decisions to providers were less likely to do so. The findings highlight the unique role of patients in identifying diagnostic errors and the need for policies promoting equitable access to visit notes, systems for tracking blindspots, and systematic patient engagement to enhance diagnostic safety and organizational learning.

Citation:
Bell SK, Bourgeois F, DesRoches CM, Dong J, Harcourt K, Liu SK, Lowe E, McGaffigan P, Ngo LH, Novack SA, Ralston JD, Salmi L, Schrandt S, Sheridan S, Sokol-Hessner L, Thomas G, Thomas EJ. Filling a gap in safety metrics: development of a patient-centred framework to identify and categorise patient-reported breakdowns related to the diagnostic process in ambulatory care. BMJ Qual Saf. 2022 Jul;31(7):526-540. doi: 10.1136/bmjqs-2021-013672. Epub 2021 Oct 16. PMID: 34656982.

Summary:
This study aimed to develop a framework with patients and families to identify and categorize patient-reported diagnostic process-related breakdowns (PRDBs) in ambulatory care, enhancing organizational learning. A multi-stakeholder advisory group co-created the framework, which was tested through qualitative analysis of 2,165 patient-reported errors from two large surveys encompassing 25,425 U.S. respondents. The framework identified 7 breakdown categories, 40 subcategories, 19 contributing factors, and 11 potential impacts, revealing errors such as missing main concerns, outdated test results, and communication gaps like not feeling heard. PRDB frequency was 6.4% and 6.9% in the datasets, with reliability rated as good-to-excellent (AC1 0.89–0.96; kappa 0.64–0.85). These findings demonstrate that the PRDB framework effectively highlights patient-reported errors, providing a foundation to engage patients as diagnostic partners and support organizational improvements.