AMIA applauds the work conducted by the Cancer Moonshot Blue Ribbon Panel, especially their call for development of a National Cancer Data Ecosystem. The continued digitization of clinical data, combined with the explosion of molecular information and patient-generated health data, create tremendous opportunities to make new discoveries and develop new treatments for cancer.
As a central tenet of this National Ecosystem, the report calls for “patients to directly contribute their data, or to request a health care provider do so on their behalf, for scientific research.” However, the vast oceans of data available in electronic health records remain locked inside systems incapable of transmitting more than simple care summaries. Without access to complete medical records, patients will not be able to fully engage with the Cancer Moonshot, Precision Medicine and other big data research efforts. And while we desperately need national leadership to address challenges related to infrastructure, interoperability and standards, we must first fuel this ecosystem with computable data contained in EHRs, so that free text remains free text and structured data remains structured.
Once comprehensive patient data are available for searching, indexing and parsing, innovative developers will find ways to make the data useful – for researchers, for clinicians and, most importantly, for patients. Proof of this concept was demonstrated by Apple when they developed a way for patients to import CCDs into HealthKit—but that was only a limited subset of patient data. Think of what might be possible if patients could import all of their data!
The report rightly identifies numerous barriers to our collective capacity to capitalize on these new opportunities. But without a digital “print all” functionality, made available through all certified EHRs, we will continue to fall short of our aspirations.
AMIA looks forward to lending our members’ collective health informatics expertise to this important effort.