Inviting patients to identify diagnostic concerns through structured evaluation of their online visit notes

Abstract Background The 21st Century Cures Act mandates patients’ access to their electronic health record (EHR) notes. To our knowledge, no previous work has systematically invited patients to proactively report diagnostic concerns while documenting and tracking their diagnostic experiences through EHR-based clinician note review. Objective To test if patients can identify concerns about their diagnosis through structured evaluation of their online visit notes. Methods In a large integrated health system, patients aged 18–85 years actively using the patient portal and seen between October 2019 and February 2020 were invited to respond to an online questionnaire if an EHR algorithm detected any recent unexpected return visit following an initial primary care consultation (“at-risk” visit). We developed and tested an instrument (Safer Dx Patient Instrument) to help patients identify concerns related to several dimensions of the diagnostic process based on notes review and recall of recent “at-risk” visits. Additional questions assessed patients’ trust in their providers and their general feelings about the visit. The primary outcome was a self-reported diagnostic concern. Multivariate logistic regression tested whether the primary outcome was predicted by instrument variables. Results Of 293 566 visits, the algorithm identified 1282 eligible patients, of whom 486 responded. After applying exclusion criteria, 418 patients were included in the analysis. Fifty-one patients (12.2%) identified a diagnostic concern. Patients were more likely to report a concern if they disagreed with statements “the care plan the provider developed for me addressed all my medical concerns” [odds ratio (OR), 2.65; 95% confidence interval [CI], 1.45–4.87) and “I trust the provider that I saw during my visit” (OR, 2.10; 95% CI, 1.19–3.71) and agreed with the statement “I did not have a good feeling about my visit” (OR, 1.48; 95% CI, 1.09–2.01). Conclusion Patients can identify diagnostic concerns based on a proactive online structured evaluation of visit notes. This surveillance strategy could potentially improve transparency in the diagnostic process.