Protecting reproductive health information in the post-Roe era: interoperability strategies for healthcare institutions

Abstract

On June 24, 2022, the US Supreme Court ended constitutional protections for abortion, resulting in wide variability in access from severe restrictions in many states and fewer restrictions in others. Healthcare institutions capture information about patients’ pregnancy and abortion care and, due to interoperability, may share it in ways that expose their providers and patients to social stigma and potential legal jeopardy in states with severe restrictions. In this article, we describe sources of risk to patients and providers that arise from interoperability and specify actions that institutions can take to reduce that risk. Institutions have significant power to define their practices for how and where care is documented, how patients are identified, where data are sent or hosted, and how patients are counseled, and thus should protect patients’ privacy and ability to receive medical care that is safe and legal where it is performed.

Shifting into Action: from Data Segmentation to Equitable Interoperability for Adolescents (and Everyone Else)

“…Furthermore, patients may face implicit and explicit biases basheron EHR information. [40][41][42][43][44][45][46][47] Patients may wish to block certain data from being shared, but due to limitations in segmentation abilities, must share data in an all or none fashion regardless of platform. Furthermore, requesting that data not be shared through the HIE and the health system requires a savvy patient and institutional compliance.…”

“…Even when such care is lawful, data redaction could prevent the stigma and bias experienced by some patients when providers are aware of the care. 40,[42][43][44][45][46][47] Existing Work Some EHR vendors have, and continue to, develop vendorspecific functionality that supports tagging of sensitive data, specifically for release to the portal. These development efforts accelerated in response to the 21st Century Information Blocking Final Rule.…”

“…1 48 Information blocking is “a practice that is likely to interfere with the access, exchange or use of electronic health information, except as required by law or specified in an information blocking exception.” 49 50 51 52 The Dobbs decision heightens the urgency for development of functionality enabling granular segmentation of reproductive health and pregnancy outcomes data from a broad range of health care stakeholders, particularly for interstate data sharing. 40 41 Lack of granular segmentation standards that accommodate information blocking exceptions may ultimately result in less information sharing. Implementation of functionality to comply with information blocking provisions has made privacy concerns a lived reality for clinical staff, patients, and technology vendors alike.…”

Paging the Clinical Informatics Community: Respond STAT to Dobbs v. Jackson's Women's Health Organization

“…5.2 Action: At the federal level, the clinical informatics community should advocate for amending HIPAA's Privacy Rule to require specific consent before sharing records pertaining to abortion-related care, or, at least, amend the Information Blocking provision 25 to expressly protect hospital policies that are narrowly tailored to protect information related to abortion care. 23,24 5.3 Action: At the state level, the clinical informatics community should advocate for the states seeking to be safe havens to develop their own privacy requirements for medical records pertaining to reproductive services, including abortion.…”

“…5.2 Action: At the federal level, the clinical informatics community should advocate for amending HIPAA's Privacy Rule to require specific consent before sharing records pertaining to abortion-related care, or, at least, amend the Information Blocking provision 25 to expressly protect hospital policies that are narrowly tailored to protect information related to abortion care. 23 24 26 …”