Post-Roe Patient Privacy Requires Focus on Health Data Sharing

Healthcare organizations should revise their data sharing strategies to protect patient privacy with the Supreme Court’s recent decision to end constitutional protections for abortion, according to a study published in JAMIA.

Healthcare organizations may share data about patients’ pregnancy and abortion care with other institutions in ways that could expose providers and patients to social stigma and potential legal jeopardy in states with severe abortion restrictions.  

“Patients’ pregnancy and abortion care are more exposed than ever before,” the study authors wrote. “Even if institutions protect pregnancy and abortion data, through existing and expanding interoperability the associated information footprint will quickly expand to labs, pharmacies, payers, and patient-managed apps.”

The researchers suggested several ways healthcare organizations can protect patient reproductive data.

Reduce the specificity of pregnancy and abortion documentation

The study noted that EHR vendors have worked to improve documentation of pregnancy status in recent years by encouraging affirmative documentation to facilitate alerts to avoid teratogenic medications.

“We recommend that institutions consider documenting pregnancy status later in the pregnancy and not do so in cases where abortion is being considered until after a decision has been made to continue the pregnancy,” the authors wrote.

Revise institutional data sharing approaches

While the ONC information blocking regulations seek to increase data sharing, they allow an institution or healthcare provider to refuse to disclose health data in compliance with an applicable privacy law, or an internal long-standing privacy policy.

The researchers suggested that institutions add pregnancy and abortion care to their policy regarding “grounds to refuse.”

Identity protection

Since HIPAA does not protect patient data from legal proceedings, institutions may consider issuing alternate identities to patients when they seek abortion care, effectively creating a “shadow” secondary chart, the researchers said.

However, this strategy carries risks, as important health information such as allergies, medications, and other health problems are “invisible.”

“Moreover, it is unclear if insurance claims could be submitted in this scenario without relinking the charts,” the study authors noted. “Finally, if prescriptions to pharmacies are associated with an alternate identity, patients may be unable to obtain medications.”

Offering “in house” services and billing, and data storage

Given the risks of sharing laboratory, imaging, and pharmacy data, healthcare institutions may consider providing these services “in house.” For instance, abortion medications may be dispensed by clinics directly.

“Additionally, institutions might consider providing patients seeking abortion care an opportunity to forego insurance coverage and pay out of pocket to avoid the generation of an insurance claim,” the researchers said.

“Since these approaches could lead to disparities for patients without resources, institutions could also create funds for such care or provide care at cost in specific cases,” the authors suggested. “Institutions should also review where their data are hosted and consider moving data that reside in severely restricted states to less-restricted states.”