The following comments were submitted by President and CEO Richard Besser, MD, of the Robert Wood Johnson Foundation (hereinafter "RWJF" or "the Foundation"), in response to the U.S. Department of Health and Human Services (HHS) Notice of Proposed Rulemaking published in the Federal Register on April 17, 2023, regarding reproductive healthcare privacy.
RWJF is committed to improving health and health equity for all in the United States. In partnership with others, we are working to develop a Culture of Health rooted in equity that provides every individual with a fair and just opportunity to thrive, no matter who they are, where they live, or how much money they have.
Health is more than an absence of disease. It is a state of physical, mental, and emotional wellbeing. It reflects what takes place in our communities, where we live and work, where our children learn and play, and where we gather to worship. That is why RWJF focuses on identifying, illuminating, and addressing the barriers to health caused by structural racism and other forms of discrimination, including sexism, ableism, and prejudice based on sexual orientation.
We rely on evidence to advance health equity. We cultivate leaders who work individually and collectively across sectors to address health equity. We promote policies, practices, and systems change to dismantle the structural barriers to wellbeing created by racism. We work to amplify voices to shift national conversations and attitudes about health and health equity.
Our comments are grounded in the perspectives and expertise of our grantees, who include organizations seeking to advance reproductive health equity, such as the National Birth Equity Collaborative, National Health Law Program, National Partnership for Women and Families, National Women’s Law Center, the Network for Public Health Law, and SisterSong as well as a wide array of academic researchers who have significant experience evaluating the role of trust in the provider-patient relationship.
For instance, RWJF funded a series of studies on consumer experiences that generated important findings about patient trust in the health care system. Those studies reveal the importance of trust between physician and patient: patients have nuanced trust relationships and often trust their own doctor more than their insurer or other parts of the healthcare system. RWJF-funded research further demonstrates that physician-patient trust is important for quality care: when evaluating quality, patients focus on the interpersonal relationship between patient and provider and are more likely to follow a doctor’s medical advice and take medications as directed when they trust and feel respected by their doctor. RWJF continues to fund work that seeks to examine how to measure and rebuild medical trust, given the long history of medical discrimination and abuse experienced by Black, Latinx, and other communities of color.
In addition, RWJF has significant funding focused on reproductive healthcare, including a strong focus on reducing maternal mortality and morbidity and striving toward birth justice. Birth justice is a vision for the future where everyone has the safe, respectful, and dignified care and treatment they need to have healthy pregnancies and healthy babies, recognizing that our current systems are not set up to support these outcomes for everyone. We will get there by centering the perspectives and decision-making power of Black, Indigenous and other people of color to dismantle the structural racism and health inequities that fuel the disparities in healthcare and wellbeing from prenatal to pregnancy, birth, postpartum and beyond.
Access to safe and high-quality reproductive medical care, including abortion, is an essential element of comprehensive healthcare and health equity. Trust between patients and providers is a critical component to ensuring meaningful access, particularly in the current moment where access to abortion and other reproductive healthcare services is under attack. Current attempts to restrict access include efforts to criminalize abortion and its providers, which threatens the ability of medical professionals to protect the health of their patients and erodes individuals’ rights and autonomy to make decisions about their own health.
Therefore, RWJF strongly supports HHS establishing robust protections against disclosing reproductive health information for use in any investigation or proceeding, whether criminal, civil, or administrative, that targets a patient or provider. Further, RWJF believes that no one should be criminalized or penalized for use of essential healthcare. Healthcare professionals should be able to deliver care that is person-centered and that focuses on meeting the needs of the people they are serving. They should not face interference from anyone outside the clinician-patient relationship.
As outlined here, our comments present research that underscores the importance of robust privacy protections, highlighting the particular importance for communities of color who are more likely to be affected by laws restricting and criminalizing abortion, have history of medical mistrust due to structural racism in medicine, and are more likely to be the targets of investigations due to structural racism in policing and criminal systems. Finally, we identify additional areas where HHS could further expand and strengthen protections to better protect and preserve access to critical healthcare services.
I. Research demonstrates that trust between providers and patients is critical to ensure quality healthcare.
II. Research demonstrates that access to quality reproductive healthcare is critical for health equity.
III. The threat of disclosing reproductive healthcare records will undermine trust and harm access to quality reproductive healthcare.
IV. Disclosures for public health purposes are important but must ensure that data is sufficiently de-identified.
V. Additional protections are necessary:
A. Remove “lawful” limitation;
B. Strengthen protections against “child” abuse reporting;
C. Add protection for school-based health care records; and
D. Add protection for gender affirming care.
I. Research demonstrates that trust between providers and patients is critical to ensure quality healthcare.
Research demonstrates that mutual trust between provider and patient is a critical component to quality healthcare.
Patients who trust their providers have shown greater willingness and comfort accessing preventive care and acute care; a higher likelihood to make recommended behavioral changes or adherence to prescribed treatments; longer continuous engagement in care; and better self-reported health ratings. Conversely, a patient’s mistrust of a provider can impact quality of care and outcomes: patients are more likely to delay care or stop medications following experiences that engender mistrust. Medical mistrust is particularly high among Black, Latinx, Indigenous and other communities of color due to both the long history of abuse and structural racism in medicine and contemporary experiences of discrimination. Abuses such as forced sterilization of Black, Indigenous, and other people of color and individuals with disabilities specifically exacerbate medical mistrust within reproductive healthcare.
Providers who mistrust their patients are more likely to ignore complaints and decline to offer necessary treatments, a burden that falls disproportionately on women and Black patients. For example, people with sickle cell disease, which disproportionately affects those of African descent, frequently report being treated with suspicion and distrust and experience extreme frustration in convincing clinicians of their pain. Similarly, evidence shows that implicit bias among maternal health practitioners results in unequal treatment decisions and contributes to high maternal mortality for Black women when their reported symptoms are not believed.1
II. Research demonstrates that access to quality reproductive healthcare is critical for health equity.
RWJF appreciates the rule’s broad definition of reproductive healthcare as it reflects the evidence that access to the full range of reproductive healthcare, including abortion, is critical to health equity. Given the critically high maternal and infant morbidity and mortality rates and disparities in Black women’s sexual health outcomes, we must ensure that women have access to comprehensive reproductive healthcare as a cornerstone of ensuring their health and wellness across their lifespan.
Comprehensive reproductive healthcare includes family planning and abortion. Family planning is important for healthy outcomes for children, women, and other people who can become pregnant. About half of all pregnancies in the U.S. are unplanned. Women with unintended pregnancies that are continued to term are more likely to receive inadequate or delayed prenatal care and have poorer health outcomes such as infant low birth weight, infant mortality, and maternal mortality and morbidity than women with planned pregnancies. Women and children are healthier, achieve better educational outcomes, and have greater financial stability when children are born as a result of a planned pregnancy. Lower-income women, women of color, and immigrants already experience greater barriers to accessing comprehensive reproductive healthcare services and information, leading to greater incidence of adverse outcomes for themselves and their children.
Abortion is also an essential reproductive healthcare service and it is well-documented that limiting access to abortion negatively impacts health outcomes. Women who seek abortions but cannot get them because they are past the gestational age limit for the procedure report more long-term health problems, such as chronic headaches, migraines, and joint pain, than those who obtained abortions. In addition, women denied an abortion are more likely than women who received an abortion to experience economic hardship and insecurity lasting years. Furthermore, data shows states that have enacted legislation to restrict abortions based on gestational age have increased their maternal mortality rates by nearly 40 percent.
III. The threat of disclosing reproductive healthcare records will undermine trust, harm access to quality reproductive healthcare, and impact health outcomes.
Since the U.S. Supreme Court decision in Dobbs v. Jackson Women’s Health Organization (hereinafter “Dobbs”), there has been a wave of laws limiting access to reproductive healthcare, with many of these laws moving toward criminalizing both patients and healthcare providers. For instance, Texas authorized private citizens to sue anyone perceived to be helping patients obtain abortions. Many states have passed laws imposing jail time for healthcare providers who perform abortions past statutory gestational limits.
Black, Indigenous, and other pregnant people of color are more likely to be criminalized than White pregnant people because they are more likely to live in states that criminalize abortion and they are more likely to be the target of law enforcement and child welfare proceedings for seeking their reproductive healthcare.
Given this landscape, healthcare providers and patients have both expressed fears about being targeted for investigation, resulting in changes in how reproductive healthcare is accessed and delivered.
When patients do seek reproductive healthcare, they may reasonably withhold information from healthcare providers if they believe it could be disclosed and used against them. For instance, a pregnant person might choose not to disclose a prior negative pregnancy outcome that resulted in an abortion, leaving the provider without complete medical history to inform current treatment. Providers report that they struggle to trust patients when they do not provide complete, honest information, undermining mutual trust and quality care.
Providers often document their mistrust through stigmatizing language in medical records.Systemic and implicit bias among medical providers means that disbelieving language appears disproportionately in medical records of Black and other patients of color. Providers are increasingly including quotations in medical records in ways that suggest what the patient said was inaccurate, highlight unsophisticated language, and effectively mock the patient, with disproportionate impacts by gender and race. Increasing scrutiny of those medical records in criminal and other investigations—where a patient’s prior statements and credibility can be decisive—will exacerbate the harm from physicians questioning a patient’s credibility in medical records. This further contributes to disproportionate targeting and impact on Black and other people of color and underscores the need for robust privacy protections.
The threat of disclosure will also result in patients delaying or skipping care altogether. People experiencing miscarriages may be afraid to seek care for fear of investigation, which risks serious medical complications and exacerbates psychological trauma around pregnancy loss. Some pregnant people are choosing to forego prenatal care in order to avoid surveillance. Evidence from the Title X family planning program context confirms that patients are sensitive to fears of confidentiality breaches when accessing reproductive healthcare: for instance, patients often avoid using insurance to avoid having bills or explanations of benefits sent to their home.
The potential for disclosure of medical records for use in criminal or other investigations will change providers’ behavior, as well. Since Dobbs, there have already been reports of hospitals delaying abortion care until a woman’s health has deteriorated to more clearly fit into exceptions for “risk to life of the mother” or refusing to provide abortion care at all. This conduct risks serious health complications for the pregnant person, including loss of future fertility, infection, hemorrhage, and death. Other providers have reported not disclosing all treatment options and withholding information for fear that their advice could violate state laws. Providers have also reported fear of offering treatment for cancers because the chemotherapy and radiation could impact a pregnancy.
Finally, the increased stress of potential criminalization or other investigation during pregnancy can result in worse health outcomes for the birthing person and the infant. Evidence suggests that the stress of experiencing daily racism and racism in accessing medical care contributes to disparities in outcomes for Black birthing people and infants. Adding the potential for criminal, child welfare, or other investigation for accessing reproductive healthcare will only exacerbate that stress.
IV. Disclosures for public health purposes are important but must ensure that data is sufficiently de-identified.
The rule would permit disclosure for public health surveillance, investigation, and intervention with “public health” defined as, population-level activities to prevent disease and promote health of populations. Such activities do not include uses and disclosures for the criminal, civil, or administrative investigation into or proceeding against a person in connection with obtaining, providing, or facilitating reproductive health care, or for the identification of any person in connection with a criminal, civil, or administrative investigation into proceeding against a person in connection with obtaining, providing, or facilitating reproductive health care.
RWJF affirms the importance of ensuring that data can be disclosed for public health purposes. As demonstrated by the COVID-19 pandemic and ongoing maternal mortality crisis, robust public health surveillance and data, including disaggregated demographic data, is critical to ensuring health equity. RWJF believes that the proposed definition appropriately allows sharing of reproductive healthcare information for important purposes like research related to maternal mortality and morbidity, but only when the covered entity receives assurance that it won't be used for investigations against patients or providers. We emphasize the importance of including in the regulatory definition language clarifying that public health activities should never include investigations in the provision of desired, medically appropriate healthcare.
Finally, we underscore the importance of de-identified and anonymized public health data, even when analyzing sub-group data. We encourage HHS to add additional protections to the rule to ensure that data reported for public health purposes, particularly publicly-reported data, are sufficiently de-identified to prevent subsequent re-identification for use in any investigation, even where that was not the original purpose. For example, if a state requires the reporting of all abortions to a public health agency and requires the disclosure of a patient’s age, ZIP code, and ethnicity, in some areas that could be sufficient data to identify a patient and trigger an investigation.
V. Additional protections are necessary.
RWJF believes that people should not be criminalized or subject to civil or administrative investigation for seeking necessary healthcare. While the rule as proposed creates important protections, it does not go far enough. Individuals in states with severe abortion restrictions will see little benefit from the rule as currently written. Individuals subject to criminalization for seeking non-reproductive healthcare, such as gender affirming care or treatment for substance use disorder, likewise remain unprotected. The rule also does not protect sensitive information against disclosure for use in investigation by data brokers, who are not subject to the rule, nor does it provide guidance on how to ensure that billing practices preserve confidentiality, which is a problem that has been studied in the context of Title X reproductive health services. To fully embrace the principle that people should not be criminalized or subject to civil or administrative investigation for seeking necessary healthcare, HHS should strengthen the rule to protect all people at risk of such criminalization or other investigation for use of essential health care. We have outlined some specific suggestions below and further recommend that HHS comprehensively review the rule to identify additional opportunities to strengthen privacy protections for patients and providers.
A. Remove “lawful” limitation
The rule creates several important protections for individuals who live in states with minimal abortion restrictions or who are easily able to travel to states where abortion remains legal. However,the proposed rule’s limitation to care that is lawful in the circumstance in which it is provided will do little to help people who live in states with severe or total restrictions on abortion, who are more likely to be Black, Latinx, and Indigenous. By adding protections that are more likely to protect wealthy, White patients, the rule as written could exacerbate disparities in who is criminalized for accessing reproductive healthcare. We therefore encourage HHS to remove the proposed rule’s limitation to ”lawful” reproductive healthcare and extend the prohibition on using or disclosing private health information for criminal, civil, or administrative investigations or proceedings to all reproductive healthcare.
Moreover, the proposed rule puts the onus on reproductive healthcare providers to make complicated judgments about whether care is lawful in a variety of contexts. Providers are already reporting the difficulty of applying vague exceptions in state abortion laws regulating their care. Where providers have information about reproductive care provided in another state, this could mean evaluating whether care was lawful in states where the provider does not practice. Adding potential HIPAA liability to these determinations puts reproductive healthcare providers at risk of further investigation and liability.
At the very least, requiring providers to distinguish between lawful and unlawful care is likely to substantially increase administrative costs. Providers may need to review complete medical records to evaluate whether someone’s life was sufficiently at risk to make care lawful. Providers will need to carefully monitor the rapidly-changing abortion laws in many states and will likely need to consult with attorneys prior to making disclosures. Elsewhere in the proposed rule, HHS seeks to minimize the burden on reproductive healthcare providers, for instance, in requiring the requester to provide an attestation about the purpose of the request. The requirement to evaluate whether care is lawful severely undercuts these efforts.
These administrative burdens will be added to already burdened reproductive healthcare providers in a time when states are themselves using administrative burdens to further restrict access to abortion care and causing clinics to close. In short, to accomplish the stated intent of the rule, HHS should protect disclosure of all reproductive healthcare information without requiring providers to evaluate whether the care was lawful at the time and place it was provided.
B. Strengthen protections against “child” abuse reporting
RWJF appreciates that HHS has proposed to define investigations broadly, as child welfare or other non-criminal proceedings can also create fear and deter access to care, and to clarify in the preamble that because “child” does not include a fetus, embryo, or fertilized egg, abortions would not constitute child abuse. Accordingly, HHS explains that “the Department believes that ‘child abuse’ as used in the Privacy Rule and section 1178(b) is best interpreted to exclude conduct based solely on seeking, obtaining, providing, or facilitating reproductive health care.”
Currently, however, pregnant people face significant criminalization or investigation for child abuse for reasons in addition to abortion, most often for substance use and seeking substance use treatment. Due to systemic and historical racism in both the child welfare and the criminal system, such child welfare investigations and associated criminal prosecutions disproportionately target Black and low-income women.
It is not clear whether the proposed rule’s definition of “reproductive health care” would include treatment for substance use disorder received during a pregnancy and protect this health information from disclosure. Thus, to fully align with the principle that individuals should not be criminalized for seeking necessary medical care, we encourage HHS to make clear in the final rule that all records related to care sought during pregnancy are prohibited from disclosure for use in investigations, including investigations for child abuse.
C. Add protection for school-based health care records
We also note that the rule does not protect educational records maintained by school nurses who see adolescent patients in schools but who are not covered entities. While we understand that educational record privacy is outside the Department’s purview, we encourage the Department to work with the U.S. Department of Education to protect the reproductive health records held by schools.
Adolescents are among the most vulnerable patients in need of reproductive healthcare as they are under-resourced and often unable to make their own medical decisions. If a student chooses to speak to a school nurse regarding reproductive health concerns, the nurse’s records could be subject to inspection by the student’s parents as health records become part of a student’s educational record, which is open to inspection upon request by that student’s parent/guardian. Whereas, under HIPAA, if a minor consents to reproductive healthcare permissible under state law and does not use their guardian’s health insurance, their records would be confidential under HIPAA. We encourage cross-agency conversation to fill in the gaps left by the Family Educational Rights and Privacy Act and secure reproductive healthcare privacy for minors as appropriate.
D. Add protection for gender affirming care
Finally, RWJF notes that reproductive healthcare is not the only healthcare that has become increasingly criminalized. Several states have already criminalized gender affirming care, particularly targeting youths, and many more have introduced legislation seeking to criminalize such care. Texas initiated child welfare investigations based on allegations that youths were receiving gender affirming care. The consequences for individuals seeking gender affirming care and for providers of that care are parallel to those impacting reproductive healthcare patients and providers. For instance, Kaiser Family Foundation reports that “providers may be torn between what the medical literature supports is in the best interest of their patients or facing potential sanctions, including violating professional ethics around confidentiality.” Thus, RWJF encourages HHS to create a similar protection against disclosure of protected health information related to seeking, obtaining, or providing gender affirming care.
We thank you for the opportunity to comment on the Proposed Rule. We have included numerous citations to supporting research, including direct links to the research. We direct HHS to each of the materials we have cited and made available through active links, and we request that the full text of each of the studies and articles cited, along with the full text of our comment, be considered part of the formal administrative record for purposes of the Administrative Procedure Act. If HHS is not planning to consider these materials part of the record as we have requested here, we ask that you notify us and provide us an opportunity to submit copies of the studies and articles into the record.
We look forward to continuing to work with the Department and other partners to ensure that everyone has access to safe and high-quality reproductive healthcare, including abortion.
1. RWJF recognizes that in addition to cis-women, trans, intersex, genderfluid, and gender nonconforming individuals may experience pregnancy, and that all people have reproductive health needs. In these comments, we use the words “woman” or “women” when needed to accurately reflect the scope of research that focuses solely on women.
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