Why Our Registry Needs Full EHI via Patient-Approved API

Today’s policy: Mandate API-Accessible, Computable Full EHI Export.

Voice: Coordinator, Complex Condition Outcomes Registry

Our registry studies outcomes for patients with complex, chronic conditions. Much of their detailed history resides within one primary healthcare institution. To advance research, we need more than a surface-level snapshot from that institution. Current APIs often provide USCDI data – labs, meds, basic diagnoses. This is valuable, but insufficient for deep understanding. We need the complete Electronic Health Information (EHI) held by their provider: full specialist notes, results from specialized diagnostics, nuanced treatment plans, and embedded patient-reported information. Currently, for a patient to share this complete EHI, the process is incredibly burdensome. They face manual requests at their institution, waiting for staff, receiving potentially huge, unorganized files, and then figuring out how to securely send it all to us. It’s a lot for someone managing a chronic illness, leading to incomplete data or lost participation. This recommendation – to mandate a standardized API for patients to access and direct their complete EHI, as envisioned by the Argonaut Project’s EHI Export API guide – offers a vastly better path. USCDI Isn’t Enough for Deep Insights: This policy acknowledges that real understanding often requires the full EHI from their provider, not just the USCDI subset. Empowering Patients, Simplifying Sharing: Instead of the patient manually collecting and sending their massive medical record, they could use our trusted registry application to authorize the secure, electronic transfer of their complete EHI directly from their institution to us. One patient approval via the API could unlock the rich data we need. Standardized and More Computable: An API aligned with Argonaut means the EHI, with its diverse data types, would come in a more organized, documented fashion, making it far easier for our research systems to process and analyze. “With this API-driven EHI export, patients could far more easily share their complete health story from their institution. This means our registry gets richer, more usable data, enabling us to better understand disease progression, treatment effectiveness, and improve care for everyone affected by this condition. It puts the patient in control while dramatically reducing their burden.