Over 10 years ago, taxpayers forked over $36 billion in an effort to promote the widespread adoption of electronic health records (EHRs). As of 2017, 85.9% of office-based physicians used EHRs, which seemed to promise an exciting future.
This future would be one in which health information would no longer be collected, managed, and shared on paper, but instead, electronically. It promised to remove from patients the burden of having to reconstruct from memory a lifetime of medical information in a moment of crisis.
However, in August 2017, that future could not have been further away for my family. After returning to D.C. after a trip with my husband and two children, I received the call that every wife and mother dreads. “Mom, Dad passed out,” I heard my daughter say before handing the phone to the paramedics. They peppered me with questions about medications, medical history, recent visits to the doctor, and more. I had virtually no answers and no idea how to get them. I found myself juggling conversations, looking for travel arrangements, and comforting my children, all while trying to track down doctors and records.
When he collapsed, he happened to fall at the feet of an off-duty nurse, who administered CPR for several minutes until one of Philadelphia International Airport’s defibrillators could be brought to the scene. Miraculously, he was revived after six shocks to his chest, surviving a serious medical condition with a survival rate of under 1%.
Call it blind chance or divine intervention, but it combined with good Samaritans and modern medicine to save my husband’s life. As I had already learned the hard way from this harrowing experience, medical record technology had not kept up with the advances that saved my husband’s life.
When we were close to discharge, I asked for his records. We would soon be returning to our doctor in Indiana, and I knew that every element of his treatment — test results, information from hospital equipment, drugs administered — could be used to inform his treatment going forward. They handed me five sheets of paper and a CD-ROM containing information about just one of the procedures he underwent. I was floored. Where was all the information they had been collecting?
A few days later, it struck me how my own situation echoed the sentiments I had heard on a recent nationwide listening tour: the future we were sold 10 years ago was still a long way off. Americans like myself were encountering barriers to accessing essential health information. While the original taxpayer investment drove the adoption of EHRs, different systems remained unable to communicate with one another.
So under the leadership of President Donald Trump, the Centers for Medicare and Medicaid Services began working with the White House Office of American Innovation to implement a vision in which our medical data flow seamlessly from every interaction we have in the health-care system.
The implementation of that vision has had many phases, but recently, we unveiled the most transformative one yet: a major final rule that requires that all health plans doing business in Medicare, Medicaid, CHIP, and the federal exchanges share health data with their patients. In effect, it enables innovative app developers to deliver patient data directly to a patient’s phone, so they can easily share it.
At a time when the coronavirus situation brings trepidation, the need for the sort of coordination of care could not be clearer. In a crisis like the one my family went through, it can mean the difference between life and death.