With the fall of Roe v. Wade in June 2022, the reproductive health landscape changed in ways unimaginable a short time ago, when electronic health records became the norm. With increasing interoperability of medical records, reproductive health information is being shared widely and across state lines. This may put women seeking healthcare outside of their home state in a precarious position, risking their privacy, health and liberty.
We have already seen cases where records automatically crossing state lines via Health Information Exchanges (HIEs) had real and harmful consequences. We know of one woman who was reported to Child Protective Services (CPS) after having a legal abortion in another state. Other patients had their abortions disclosed to small town primary care providers who they fear will now treat them differently and might not protect their confidentiality.
The good news is that California and CAFP are once again taking the lead. These two bills were signed into law in 2023, with CAFP support:
Adds reproductive and sexual health information to existing confidentiality law. This includes period and gender transition medication tracking apps. View CAFP support letter here.
Requires that businesses that electronically store or maintain medical records make it possible to limit user access and segregate medical information related to gender affirming care, abortion and abortion-related services, and contraception. The bill also prohibits health care providers from providing medical information to an individual, agency, or department from another state that would identify an individual as seeking or obtaining an abortion or abortion-related services that are lawful in CA. View support letter here.
While these laws in California (and Maryland) are vital, the technology isn’t yet up to the task. Electronic medical records companies have been working for years to make the sharing of records as seamless as possible. However, in a world where some health care is legal in one state but criminal in another state, the risks to patients and providers when records are shared across state lines are substantial.
Last year, I started a national working group called PRIVATE Medical Records: Protect Reproductive Information Via Advocacy on Technology and Electronic Medical Records. We are a group of concerned citizens with roots in healthcare and advocacy. We are clinicians, attorneys, administrators and informaticists from across the United States. Members come from many organizations such as UCSF, Planned Parenthood, the ACLU, the EFF, and the Digital Defense Fund. PRIVATE Medical Records is committed to advocating for technology policies that strike a balance between the benefits of interoperability and the paramount need to protect patient confidentiality.
As family physicians and citizens, we can stand united in safeguarding the sanctity of our patients' personal medical information and setting guard rails on interoperability with a commitment to both progress and privacy. Contact your EMR provider to see how they plan to protect reproductive health records. If you would like to get involved or track PRIVATE’s progress, contact me at panna@sonic.net.
Read more at:
The Abortion Interoperability Trap, Carleen M. Zubrzycki, Yale Law Journal
The Trade-Offs for Privacy in a Post-Dobbs Era, Christine Henneberg, Wired Magazine
Paging the Clinical Informatics Community: Respond STAT to Dobbs v. Jackson’s Women’s Health Organization, Applied Clinical Informatics
