By LEO LOPEZ III, MD
I’m a physician, born in McAllen, Texas. In June 2018, I returned home to demand that immigrant children who had been torn from their families as a result of the Trump Administration’s zero-tolerance policy, be safely and immediately reunited. I demonstrated at a federal detention center in McAllen at the Free the Children Protest. I marched alongside other concerned citizens, and we confronted a bus carrying the children.
With my palms pressed against the bus, I demanded that the government free them. I could not have imagined that just a few months later, I’d demand that the government find them.
Back then, the Office and Refugee and Resettlement had just certified that over 2,600 children had been separated from their families.
The Office of Inspector General (OIG) of the Department of Health and Human Services recently released an updated account. They actually weren’t sure how many children were separated. Turns out they didn’t count them. According to the report, HHS doesn’t know exactly if, when, or how they’ll find the lost children.
I grew up right there, along the south-Texas border, and I know that cattle are better accounted for than these infants and children.
So whose fault is it? In my opinion, the blame falls on Health and Human Services Secretary Alex Azar and Homeland Security Secretary Kristjen Nielsen, both of whom are ultimately responsible for executing the President’s policy agenda through their respective departments. The Department of Homeland Security (DHS) systematically separated families. The Department of Health and Human Services failed to identify the children who were separated.
21st Century Cures is now law. Aside from its touted research and mental health provisions, it’s the most significant health information technology regulation since HITECH, now 8 years ago. A decent summary of the health IT provisions of the bill by John Halamka concludes with “That is just not realistic.” He’s almost certainly right to the extent your perspective is the hospital-centered mega-EHR model. You can’t get there from here.
Halamka and others who think that consolidated institutions will drive interoperability are in denial of the gap between financial integration and clinical integration. This recent post by Kip Sullivan describes some of the wishful thinking. But there’s another reason why HITECH’s institutional EHRs cannot get us to the Triple Aim, and it’s mostly about liability.
Halamka ignored one of the items in 21st Century Cures that could lead to clinical integration around a patient: a longitudinal health record. Section 4006 on page 149 includes:
“(1) IN GENERAL.—The Secretary shall use existing authorities to encourage partnerships between health information exchange organizations and networks and health care providers, health plans, and other appropriate entities with the goal of offering patients access to their electronic health information in a single, longitudinal format that is easy to understand, secure, and may be updated automatically.”
Useful longitudinal health records require curation and, almost by definition, the curators are not going to be affiliated with any single hospital or other institution operating a traditional EHR. Allowing licensed physicians, family caregivers, and the patient themselves to edit an institutional EHR is risky to the point of impossible. That’s why the current initiatives to introduce modern APIs into EHRs like SMART and Sync for Science are read-only.