How the New ONC Cures Act Will Transform Patient Access to Healthcare Data
By Ariel Katz
Ariel Katz is founder and CEO of H1 of New York, NY.
On April 5, the non-partisan federal rules mandating Open Notes for healthcare data took effect. Known as the Cures Act, the rules specify that clinical notes are among electronic information that must not be blocked and must be made available free of charge to patients.
This is a game changer for any patient who’s ever had trouble getting healthcare providers to share or exchange information on their care – i.e., nearly every US patient, ever.
Data exchange among healthcare providers has been a vexing problem for patients in the US for decades. Providers make patients pay for hard copies of their own files. They force patients to pick up CDs with copies of scans in order to get the data to another provider. They clearly aren’t up to speed on care that’s been provided elsewhere — even when it’s in the same health network — and repeat tests that have already been completed. Patients often get bounced from provider to provider, answering the same questions repeatedly before any care is even provided. The list goes on and on.
All of the problems people thought EHRs were supposed to fix are finally addressed in the Cures Act.
Here are several health initiatives that the Cures Act will catalyze:
Making apps like Apple Health a central place where a person’s complete health data is stored
Patients will be able to access their own health data at any time in one place. This is great for patients, and also really useful for providers in emergencies. For example, say a person from New York gets into a car accident while in Mexico. ER staff can access their health info easily to quickly learn about the patient’s health status and provide the best treatment. Apple Health appears to be emerging as the frontrunner for this, but there are other options. like Google Fit.
Better international data sharing
Right now, the Cures Act applies only to healthcare data in the US. But I believe other countries will quickly follow with their own legislation and standards that will ease secure international data sharing. Increasingly we’re seeing patients, especially those with rare diseases, seeking treatment in multiple countries. Global data sharing would save time and resources, enabling providers to quickly assess what has and hasn’t already been done, leading to quicker and more efficient healthcare.
Better contact tracing for future disease outbreaks
If the Cures Act had been passed earlier – say, in 2019 – it would have completely transformed contact tracing for COVID-19. If all this technology was in place at the start of COVID, contact tracing would have been incredibly simple, and COVID’s effect could have been far less severe in our country, and maybe in the world. If there is ever another pandemic, contact tracing under the Cures Act should be a much faster and simpler process.
The Cures Act seems to have gone into effect almost unnoticed, with very little fanfare. But healthcare pros who are paying attention will quickly realize the potential here for empowering patients with better access to their own health data. Look for a host of new technology solutions enabled by this capability in the coming months.