State legislators are igniting an effort to pass a law that would give patients more say in what parts of their medical records can be accessed by medical professionals as the legislative session winds down.
The legislation would require electronic health record systems to comply with patient requests that data related to reproductive and sexual health, mental health and substance use treatment be segregated from the rest of their records. It wouldn’t delete patient data but limit who can access it at a patient’s discretion.
Privacy and reproductive rights advocates have pushed for the measure in the face of concerns that providers in New York and elsewhere could access patient records and share them with law enforcement or political activists. A former doctor at Texas Children’s Hospital in Houston, for example, leaked records about childrens’ gender-transition treatments to a conservative writer, who published them online in 2023. Federal prosecutors indicted the doctor but dropped the case in the first week of President Donald Trump’s second term.
The law, if passed by the state Senate and Assembly and signed by Gov. Kathy Hochul, would ensure that non-relevant information isn’t transmitted to providers in states that have outlawed abortion and gender-affirming care for minors, where individuals could be open to liability or harassment, said Assemblywoman Jen Lunsford, an East Rochester Democrat and the bill’s sponsor. Though it seems unlikely for prosecutors to bring legal action against a person who had an abortion in a state where it was legal to do so, future amendments could expose more patients, she said. “I don’t put it past anybody to change the rules suddenly.”
Because of the way electronic health records operate, patients’ medical records – including a history of abortion, gender transition services and HIV treatment – can often be accessed by employees beyond those providing treatment, said Albert Fox Cahn, a civil rights lawyer and executive director of the privacy advocacy group Surveillance Technology Oversight Project. At a large hospital, that can be a porous net.
“Suddenly every medical assistant, every nurse, every one of the thousands of people who work there can see your most sensitive information,” he said.
The bill passed out of the state Senate health committee Tuesday, a strong indication that leaders are counting on enough votes to get it passed in the chamber.
The legislation has the support of Planned Parenthood and the New York Civil Liberties Union, but it still needs to make it through the Assembly, where it is one of numerous bills lawmakers are hoping to advance by the end of the session on June 12.
Complicating matters was the delayed budget, which left little time to whip up support for standalone bills before lawmakers return to their districts for the summer.
In the meantime, Lunsford is having ongoing meetings with electronic recordkeepers in the hopes of maintaining momentum. “It’s on my priority list, but we’ll see,” she said.
