Background Patients and families are important contributors to the diagnostic team, but their perspectives are not reflected in current diagnostic measures. Patients/families can identify some breakdowns in the diagnostic process beyond the clinician’s view. We aimed to develop a framework with patients/families to help organisations identify and categorise patient-reported diagnostic process-related breakdowns (PRDBs) to inform organisational learning.
Method A multi-stakeholder advisory group including patients, families, clinicians, and experts in diagnostic error, patient engagement and safety, and user-centred design, co-developed a framework for PRDBs in ambulatory care. We tested the framework using standard qualitative analysis methods with two physicians and one patient coder, analysing 2165 patient-reported ambulatory errors in two large surveys representing 25 425 US respondents. We tested intercoder reliability of breakdown categorisation using the Gwet’s AC1 and Cohen’s kappa statistic. We considered agreement coefficients 0.61–0.8=good agreement and 0.81–1.00=excellent agreement.
Results The framework describes 7 patient-reported breakdown categories (with 40 subcategories), 19 patient-identified contributing factors and 11 potential patient-reported impacts. Patients identified breakdowns in each step of the diagnostic process, including missing or inaccurate main concerns and symptoms; missing/outdated test results; and communication breakdowns such as not feeling heard or misalignment between patient and provider about symptoms, events, or their significance. The frequency of PRDBs was 6.4% in one dataset and 6.9% in the other. Intercoder reliability showed good-to-excellent reliability in each dataset: AC1 0.89 (95% CI 0.89 to 0.90) to 0.96 (95% CI 0.95 to 0.97); kappa 0.64 (95% CI 0.62, to 0.66) to 0.85 (95% CI 0.83 to 0.88).
Conclusions The PRDB framework, developed in partnership with patients/families, can help organisations identify and reliably categorise PRDBs, including some that are invisible to clinicians; guide interventions to engage patients and families as diagnostic partners; and inform whole organisational learning.
- diagnostic errors
- patient safety
Data availability statement
Data may be obtained from a third party and are not publicly available.
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Contributors SKB conceived the study, obtained funding, led the research, drafted the manuscript and is the guarantor of the submitted manuscript. EJT, FB, SL, LHN and CD contributed to the grant proposal for study funding. FB, LS, and SB conducted the qualitiative analysis. JD and LHN led the statistical analyses. KH participated as a project coordinator and research assistant. FB, CD, SL, EL, PM, LHN, SN, JR, LS, SSc, SSh, LS-H, GT, and FB-B (acknowledgement) participated in the Metrics Advisory Group. AN (acknowledgement) contributed to supplementary material figure design. All authors reviewed and approved the manuscript prior to submission. Each revision and final proofs were also shared with each author for review and feedback.
Funding Support for this work was generously provided by AHRQ (grant number: 5R01HS027367-02).
Competing interests None declared.
Patient and public involvement statement Patients and family members of patients participated in the PRDB framework development from project inception to publication (6 authors).
Provenance and peer review Not commissioned; externally peer reviewed.
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