For months, patients have been able to obtain a minimum data set specified under federal law, and applications such as Apple Health Records have already dramatically expanded access.

But the new rules taking effect Thursday throw open the floodgates to a much wider swath of information, including medical images, doctors’ notes, genetic data and other details normally kept under lock and key by “blocking rules.”

Health care organizations must now give patients unfettered access to their full health records in digital format.

This is the opposite of the situation previously in place. Health systems, data networks, and the companies that sell electronic medical records determine how much data patients can access, when, and under what circumstances.

And private data brokers made huge profits by amassing hundreds of millions of de-identified medical records and selling insights to drug companies, device makers, and insurers without patients’ knowledge or consent.

According to the report published by StatNews,the new federal rules – passed under the 21st Century Cures Act – are designed to shift the balance of power to ensure that patients can not only get their data, but also choose who else to share it with. It is the jumping-off point for a patient-mediated data economy that lets consumers in health care benefit from the fluidity they’ve had for decades in banking: they can move their information easily and electronically, and link their accounts to new services and software applications.

Information blocking is a practice by an “actor” that is likely to interfere with the access, exchange, or use of electronic health information (EHI), except as required by law or specified in an information blocking exception.

On October 6, 2022, the scope of the 21st Century Cures Act Information Blocking Rule expands to prohibit health care providers from blocking or interfering with patient access to any electronic information in a “designated record set,” as the term is defined under HIPAA. and excluding psychotherapy notes and information compiled in reasonable anticipation of, or for use in, a civil, criminal, or administrative proceeding.

Information Blocking pertains only to the access, exchange, and use of EHI. This should be contrasted to HIPAA, which covers paper, electronic, and verbal data as protected health information (PHI). Individuals still have the right to access their papers records under existing HIPAA rules.

Even with the rules now in place, health data experts said change will not be fast or easy. Providers and other data holders – who have dug in their heels at every step – can still withhold information under certain exceptions. And many questions remain about protocols for sharing digital records, how to verify access rights, and even what it means to give patients all their data. Does that extend to every measurement in the ICU? Every log entry? Every email? And how will it all get standardized?