Protecting Reproductive Information
Via Advocacy on Technology and Electronic
(PRIVATE) Medical Records

Did you know? Electronic health records can be automatically shared between clinics, hospitals, insurance companies, and pharmacies. Sharing can happen even across state lines! 

This increasing connectivity (often called interoperability)  is occurring as the legal landscape in healthcare has shifted rapidly and dramatically. Now, some essential medical health care, such as abortion and gender-affirming care, is lawful in one state but may be severely restricted or banned and heavily surveilled in others. Therefore, it is essential to ensure that electronic health information about these legally sensitive services is protected against automatic sharing across state lines.

My Body. My Chart.

We believe that people should have control over the use and disclosure of their health records. This is especially essential for records of legally sensitive healthcare information regarding abortion and gender-affirming healthcare that may be the subject of searches by ill-intentioned actors, including hostile prosecutors, law enforcement, and data mining companies. 

“Legally sensitive health care information” is information about legally provided health care that, if shared across state lines, could subject the provider, patient, or both, to risk of criminalization or other adverse consequences such as loss of professional licensure or other civil penalties due to bans or restrictions on access to that care in another state.

Despite these growing risks, health medical records and electronic health information can currently be shared across state lines, in the following ways:

  • Between health care practitioner offices, clinics and hospitals where the person is a patient;

  • With insurers;

  • With national pharmacy and laboratory databases; and

  • With some third-party applications or services used on health information websites. 

Even before the Supreme Court decision in Dobbs v. Jackson Women’s Health Organization, many pregnant people faced criminalization due to their pregnancy outcomes. The most common source of initial reports to law enforcement or family regulation systems came from health care providers. See Pregnancy Justice’s report: The Rise of Pregnancy Criminalization and the If/When/How report: Self Care Criminalized. With the increasing interoperability of medical records, it is more and more difficult to protect these legally sensitive healthcare information medical records from crossing state lines and being misused.

Health records shared across state lines can be weaponized against patients, providers, and others who are trying to help the patient. This danger exists even for procedures that were legal in the state where they were performed. For example, a woman in a state with an abortion ban in place was reported to Child Protective Services by her healthcare provider after the provider automatically received the medical record of an abortion performed in a state where the care was legal. 

The risk for patients and providers in states restricting access to essential health care, like abortion and gender-affirming care, is increasing.

This group’s goal is to ensure that legally sensitive healthcare information is segregated in electronic health records and prevented from being shared across state lines. We believe this is an important step to protecting information about all sensitive healthcare from being shared in ways that betray patient privacy and trust, and put people at risk.

We are working at the state and federal levels to ensure this.

We support Federal guidelines to:

  • Require standardized segregation and/or segmentation of certain legally sensitive health care information within electronic health records and health information exchanges.

  • Include an additional exception to the current federal Information Blocking Rule to provide explicit protection against required sharing for all legally sensitive healthcare information. The current rule allows significant penalties for healthcare providers that engage in “information blocking.”

We are also working in states to:

  • Help implement new laws (MD and CA) that limit the sharing of electronic health records related to abortion and better enable segmentation and heightened protections for electronic records related to abortion and gender-affirming care.

  • Encourage other states to enact stronger protections for electronic health records related to abortion and gender-affirming care.

We’d Like to Hear From You!

If you have experienced medical records shared in ways that were problematic and want to tell your story, or would like to receive occasional updates about advocacy opportunities, please link via the buttons below and provide your contact information.