Proceedings of a Workshop—in Brief

Reproductive Health, Equity, and Society: Exploring Data Challenges and Needs in the Wake of the Dobbs v. Jackson Women’s Health Organization Decision

Proceedings of a Workshop—in Brief

In the 2022 Dobbs v. Jackson Women’s Health Organization decision, the U.S. Supreme Court removed the constitutional right to abortion by overturning Roe v. Wade. This decision added new layers of complexity to data collection and use related to reproductive health care. In response, researchers are developing new partnerships and inventive methodologies for data collection, enabling the health care and policymaking communities to understand the effects of policies and how to ensure access and quality of reproductive health care for all Americans. At the same time, researchers are grappling with both longstanding and new challenges to data collection and use post-Dobbs.

On October 5, 2023, the Standing Committee on Reproductive Health, Equity, and Society of the National Academies of Sciences, Engineering, and Medicine hosted a workshop to discuss the data available for measuring the health and social effects of the Dobbs decision. In five panels, presenters shared efforts to overcome challenges in collecting data, reported some of their findings, and outlined data that are still needed. They suggested improvements in research and funding practices to enable a better-understood, more accessible, and higher-quality reproductive health care system in the United States.

Five moderators led the panels: Yvette Roubideaux (Colorado School of Public Health), Natasha Bagdasarian (State of Michigan), Monica McLemore (University of Washington), Ellen Wright Clayton (Vanderbilt University), and Bruce N. Calonge (Colorado School of Public Health). Participants both online and in person offered comments and questions, sparking further discussion on relevant topics. Victor Dzau, president of the National Academy of Medicine, welcomed participants to the workshop; Lisa Simpson, workshop planning committee chair, gave opening remarks; and Claire Brindis, standing committee chair, offered closing remarks.

This rapporteur-authored Proceedings of a Workshop—in Brief is a high-level summary of the topics and discussions that occurred during the workshop. It should not be viewed as providing consensus conclusions or recommendations of the National Academies. This Proceedings of a Workshop—in Brief describes the information shared by speakers and participants related to the following key topic areas:

1. The impact of the Dobbs decision on data collection and use by researchers;

2. The preparation and response to the Dobbs decision from the research community;
3. The emerging picture from existing data on the impact of Dobbs on access to reproductive health care;
4. The additional data needed to fully understand the impact of the Dobbs decision on health, equity, and society;
5. Longstanding challenges to research on reproductive health care that have been further exacerbated by the Dobbs decision; and
6. Areas for which the culture or norms around research on reproductive health need to be improved.

EFFECT OF DOBBS ON DATA COLLECTION

The Dobbs decision, stated Dzau, put into motion wide-ranging changes that affect access to abortion, with disparate and overwhelming impacts on people of color, those with low-income, and those in rural areas. However, he said, there are not yet strong measures for understanding these impacts. Stigma, patients’ fear of sharing information, and criminalization in some states are affecting data collection. Dzau said that a national research infrastructure is needed to enable a comprehensive assessment of the abortion landscape and the broad impact of Dobbs on public health, the economy, and societal equity.

Complex State Law Landscape

“State abortion laws are complex, overlapping, and changing constantly,” said Adrienne Ghorashi (Temple University); this dynamic complicates both collection and analysis of data. Residents of states with abortion bans have been seeking abortion care in other states both by travel and via telemedicine. Others are self-managing abortions using online clinics, web vendors, or via community groups, said Abigail Aiken (The University of Texas at Austin). This complexity makes it difficult for researchers to track abortion volumes accurately and identify those in need of care. Several presenters also shared that both providers and patients have been confused about what is legal in their state at a given time.

Whitney Rice (Emory University) described significant decreases in abortion provision throughout the Southeast, where abortion bans are concentrated and tend to be more restrictive than in other parts of the country. Michele Goodwin (Georgetown University) pointed to the spirit behind many state laws, which have roots in the historical surveillance and punishment of individuals who are poor and/or people of color. For example, she said, in the 1980s and 1990s, Black and Brown women were ten times more likely than White women to be reported to law enforcement and/or child protective services for using illicit substances during pregnancy, even though the consumption rates across demographic groups were equal.¹ Goodwin said that recognizing this historical and cultural background is important for understanding the impacts of abortion bans on individuals and communities. She also pointed out that the spirit of abortion laws is rooted in the affirmation of personhood and constitutional rights of embryos and fetuses.

Safety and Privacy Concerns

Throughout the workshop, presenters discussed heightened safety and privacy concerns in response to the criminalization of abortion in some states. Marian Jarlenski (University of Pittsburgh) warned that new data collection methods, such as the use of new algorithms to sort and analyze data, may be used to prosecute people who received or provided care for abortion. While penalties for violations of most abortion bans are targeted at providers, Ghorashi said that law enforcement is still finding ways to prosecute patients. Fears around this topic affect the way people manage data, such as patients’ use of health-tracking apps, providers’ coding practices, and record keeping by abortion funds. In some cases, patients’ fears of disclosing abortion decisions are well founded. For example, Ghorashi stated that, of alleged cases of self-managed abortions reported to law enforcement, 39 percent are reported by health care providers.²

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Peter Embí (Vanderbilt University) said that researchers need to consider the downstream implications of the new legal landscape and address these challenges carefully. Otherwise, he stated, the lack of high-quality data will create a gap in the evidence base that will get in the way of caring for patients and shaping policies.

Ghorashi also reported that, as of June 2023, 21 states have enacted interstate shield laws, attempting to protect patients, providers, and helpers from being prosecuted for providing or accessing abortions, and restricting disclosure of medical records related to abortions received or provided in their state.³ Ghorashi added that these laws have yet to be tested in court, and the strength of these protections is unknown without further research. Leslie Wolf (Georgia State University) shared that certificates of confidentiality, issued by NIH for research on human subjects, provide broad and robust protection to facilitate research on sensitive topic (see section below for additional discussion).

Data Quality and Workforce Churn

Data quality and granularity are especially challenging to achieve post Dobbs. Scrimshaw listed several reasons, including inaccurate recording of clinical encounters; people giving socially desired or safe, rather than honest, responses; and distrust of the person or entity conducting the survey (e.g., the Tuskegee Study is mentioned frequently in certain contexts as cause for mistrust). Several presenters also discussed challenges arising from churn in the workforce. Clinicians and abortion-adjacent providers are experiencing worsening mental health and duress as a result of the criminalization of abortion. Particularly because research on reproductive care hinges on an atmosphere of trust and respect, changes in personnel can hinder progress when partnering with clinics and other data sources.

PREPARATION AND RESPONSE BY THE RESEARCH COMMUNITY

McLemore said, “Dobbs, oddly enough, has afforded us multiple opportunities to think differently about research and data.” With the leak of the draft opinion that would reverse Roe v. Wade early in 2022, the research community began to prepare and respond to the significant changes they anticipated would ensue. Researchers built upon long-running efforts to measure abortion volumes and other metrics of reproductive health care (see Table 1). For example, Aletha Akers (Guttmacher Institute) presented on the Abortion Provider Census, the results of which were first published in 1974. Jenny Higgins (University of Wisconsin–Madison) echoed statements by many panelists, saying, “It’s a renaissance time for people coming together” in partnership between research institutions.

Researchers have added to traditional data collection formats, such as surveys and interviews, by developing new methods that augment understanding of abortion access and quality of care, and that respond to new limitations to collecting data. Jason Lindo (Georgia Institute of Technology) described economists’ use of natural experiments to study the effect of policies; these require collecting data across the life course—especially because the COVID-19 pandemic is a major confounder—and across geographic areas, because people’s moves from state to state can impact access to and outcomes of care. Additionally, Renee Bracey Sherman (We Testify) and several others emphasized storytelling as a source of data that can both inform research design and communicate the results of research effectively. Higgins shared about her work using targeted Google ads to survey those seeking abortion care and Aiken highlighted partnerships with entities outside the health care system to track self-managed abortions.

THE EMERGING PICTURE: WHAT WE ARE LEARNING

Researchers on the panel shared results of their data collection and analysis, sketching an initial picture of the impact of Dobbs on abortion volumes and access. Jenny O’Donnell (Society for Family Planning) highlighted the results of #WeCount, a partnership built in response to the leak of the Dobbs decision and led by the Society of Family Planning. She reported on the month-to-month volatility of abortion volumes post Dobbs (see Figure 1) but cautioned that interpreting these results must be undertaken carefully and that there are a lot of factors

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TABLE 1
Data Collections and Centers for Research on Reproductive Health Presented by Panelists during the Workshop

^a Resound Research for Reproductive Health was known previously as the Texas Policy Evaluation Project.

SOURCE: Generated by the rapporteur based on data sources described by presenters at this workshop.

that could be contributing to these patterns. O’Donnell highlighted that the total annual abortion volume between April 2022 and March 2023 was higher than in 2020. While there is not currently causal data to explain these patterns, O’Donnell shared correlational data that suggests that shifting state policies, closure of abortion providers in some states, and a growth in the prevalence of telemedicine post-Dobbs may be among the factors contributing to the patterns in the data.

Several presenters pointed out that the national picture can sometimes obscure state- and regional-level stories, emphasizing that in some locations, people must travel long distances to access care. For example,

Caitlin Myers (Middlebury College) reported on data on abortion access that her team collected, stating that the average distance to an abortion clinic increased for about 18 million women of reproductive age after the Dobbs decision, which corresponds to about 27 percent of the U.S. population of women of reproductive age. Alison Norris (The Ohio State University) added that “we can’t valorize travel” because “what remains invisible in those narratives is the people who were unable to mobilize resources [or] travel for care and [thus] remain pregnant when they didn’t intend to.”

Requests for self-managed abortions—those performed outside of the health care context—have tripled since the Dobbs decision, said Aiken. Aiken’s team gathers data from Aid Access, which has historically been an online-only provider of abortion medication pills.

Jarlenski said that 17 states currently provide state-only Medicaid funding for abortion care. In the rest of the states where abortion is not criminalized, the Hyde Amendment prohibits use of Medicaid for abortion coverage except in cases of rape, incest, or life endangerment. She went on to state that Medicaid coverage of medically necessary abortion is associated with a 16 percent reduction in severe maternal morbidity.⁴ Additionally, Jarlenski reported on an analysis of a national abortion patient survey, which found that 80 percent of patients whose state offers Medicaid coverage used Medicaid coverage for their abortion.⁵

Julie Maslowsky (University of Illinois Chicago) presented on adolescents as an understudied population that encounters disproportionate and unique barriers to abortion care. These include restrictions for minors around travel, payment, access to medication abortion via telemedicine, and access to contraceptives. Maslowsky also pointed out that bans on abortion at 6 weeks gestational age impact adolescents disproportionately because they are likely to recognize pregnancy and seek care later than adults.⁶

WISH LIST: WHAT DATA ARE STILL NEEDED?

Participants shared remaining data needs in order to complete the picture of reproductive health care in the United States. Calonge described a need for better understanding access in terms of who is not now receiving care. Susan Scrimshaw (retired, Russell Sage College) emphasized that an understanding of the quality of abortion care is required to improve that care. She also stressed the importance of understanding health outcomes for all forms of abortion, as well as outcomes for delays in receiving care. Bracey Sherman discussed the need for a better understanding of patients’ ability to choose the form and setting of their abortion.

Rachel Hardeman (University of Minnesota) said that more data are needed on the impacts of historical practices of racism—such as coercive sterilization practices, injustices in Indigenous communities, and geographically based racism (e.g., gerrymandering)—on abortion access and quality of care. She described a tool for identifying the role of discrimination and racism in maternal mortality cases.⁸

Jarlenski and Lucia Savage (Omada Health) explained that surveys usually present questions on race and ethnicity as optional, and respondents may be uncomfortable

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or unmotivated to answer. Furthermore, said Bracey Sherman, race and ethnicity categories are often offensively broad, lacking subcategories for individuals with multiple races or ethnicities. Savage commented that the Office of Management and Budget is improving its guidance, with five main categories and four subcategories, set to be released in the summer of 2024.

Clayton discussed the need for more data on impacts of being denied an abortion in cases of fetal anomalies. Scrimshaw continued by discussing the need to better understand effects on health care providers—many are leaving states with abortion bans to protect their families and their ability to practice medicine ethically. Scrimshaw said data are needed on who is leaving and why, who is remaining, and how to improve health care in light of these changes. Maslowsky also shared that there is currently no comprehensive, historical, longitudinal public data on state policies and changes over time. Such data is needed not only to examine impact of state policies on abortion access, but also to gain an understanding of access and use of contraception, sex education, and sexually transmitted infection services.

LONGSTANDING CHALLENGES IN DATA COLLECTION

Although presenters discussed in depth the challenges and disruptions in data collection caused by the criminalization of abortion in some states, Clayton and others argued that many of the challenges have been present since and before Roe v. Wade was the ruling decision. While researchers are responding to these long-standing challenges with innovative methods and partnerships, the Dobbs decision exacerbated several specific obstacles.

Stigma

Panelists brought up stigma repeatedly as a longstanding, substantial challenge to data collection on abortion. For example, O’Donnell mentioned that stigma has long affected the decision-making of institutional review boards (IRBs). IRBs seek to minimize risk to research participants as well as institutions, however, O’Donnell observed that IRBs tend to be overly risk averse when it comes to approving abortion research. She also mentioned that stigma has led to limited federal funding, with most research on abortion made possible through private funding. However, O’Donnell stated that the National Institutes of Health (NIH) has shown greater interest in research on reproductive health more recently.

Delays, State-Level Variations, and Opposition

Presenters spoke about delays—both unintentional and intentional—in receiving requested information from state health departments. For instance, Kari White (Tides) said her team is waiting for data they requested in 2019 from the State of Texas. White also described variation in reporting practices of vital statistics records among states, making it difficult to compare states with one another.

What is more, some state legislators and policies actively oppose abortion research. For example, Higgins said that a state statute against promoting abortion applies to state employees in Wisconsin, including University of Wisconsin employees, and her team’s participation in abortion research is sometimes perceived as promotion. She said that university leaders are wary of abortion research on campus, fearing that state legislators could respond by cutting other state-sanctioned dollars for research at the university. White expressed that her team experienced similar dynamics in Texas.

Additionally, speakers shared that bots have been used by opponents of abortion to generate misinformation and threaten to skew survey results. For instance, Higgins shared that a bot submitted 3,000 surveys in a weekend, draining resources from her research team.

OPPORTUNITIES AND CONSIDERATIONS FOR FURTHER RESEARCH

In spite of longstanding challenges to research on abortion and the manifold challenges in data collection and analysis following the Dobbs decision, panelists and participants shared opportunities for new data sources and other ideas for future research. Interspersed were discussions about how to protect patients’ and providers’ data while using the proposed methods.

Electronic Health Records

Julie Adler-Milstein (University of California, San Francisco) pointed out that reproductive health research

underuses electronic health records (EHRs). Using data compiled by EHR vendors and health information exchanges for abortion research would require breaking new ground, she said, but it is worth doing because of their scale. She brought up the U.S. Core Data for Interoperability (USCDI) as an opportunity for researchers to influence what data are collected in EHRs. For example, active discussion is underway about adding subfields (e.g., dates, outcomes, postpartum status) to the pregnancy status field, and some are pushing to include fields for social determinants of health. The comment process around USCDI standards offers a “policy vehicle with teeth,” said Adler-Milstein.

In response to a question from Tracy Weitz (American University) about how to account for the many abortions that are not recorded in EHRs, McLemore discussed identifying a reproductive justice–informed data custodian, such as an entity in the Abortion Care Network, and that the midwifery movement is trying to do this as well. Adler-Milstein mentioned that researchers could tap unaffiliated clinics that purchase insurance together.

State Medicaid Data

Jarlenski reported on opportunities for research using state Medicaid data and involving some creative practices to get a fuller picture. She stated that it is important to do so because policymakers use Medicaid data regularly to make decisions. In comparison with Medicare, the Medicaid program lacks the federal investment for linking patient-experience data. However, Jarlenski shared ways to overcome these challenges; for example, her team links family members to understand multiracial households. Also, she said, the broader impacts of abortion policies could be better understood by looking at birth and pregnancy outcomes reported in Medicaid data.

Certificates of Confidentiality

Leslie Wolf (Georgia State University) described the protections in Certificates of Confidentiality (CoCs) offered by NIH, which she said provide broad and robust protection to facilitate research on sensitive topics. CoCs grant authority to their holders to avoid compelled disclosure of identifiable information in civil, criminal, administrative, legislative, or other proceedings at federal, state, or local levels. Research funded by NIH comes with a CoC automatically, but non–federally funded researchers can also apply for coverage. In response to questions about support from NIH for abortion research, Wolf stated that reproductive health is a welcome topic of study. Some participants also mentioned the need to educate IRBs on CoCs as legitimate protection. Wolf mentioned PRIM&R (Public Responsibility in Medicine and Research) as a valuable resource for educating IRBs on this topic.

Sharing Data and Stories with Policymakers

Panelists discussed various aspects of presenting information and stories, such as those shared in the workshop, with policymakers, especially those with influence in states that restrict abortions. In response to the concern that even high-quality data will not persuade policymakers, Maslowsky cited evidence that state legislators use scientific evidence to build consensus and form decisions.⁷

Both participants and panelists commented on how to communicate with policymakers effectively. Justin Lappen (Case Western) emphasized the importance of documenting increased morbidity and mortality resulting from abortion restrictions. Lindo encouraged adding up the potential for long-term generational economic impacts of policies, as well as describing the long-term effects of policies on children. Bracey Sherman emphasized the importance of telling the authentic stories of people who have abortions and moving away from what she describes as “extractive and opportunist” abortion stories that “elevate, sympathetic narratives or extreme cases” that don’t “actually represent the data of who has abortions.” Importantly, these narratives often neglect the experiences of Black and Brown women.

CONSIDERING AREAS FOR IMPROVEMENT

Panelists described areas in which the culture or norms around research on reproductive health need to be improved. Both panelists and participants reframed several concepts during the workshop, as outlined in Box 1.

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Engaging Communities in Research

Numerous presenters urged researchers to adopt and funders to resource community-engaged research methods, which McLemore described as pairing “experts by experience with experts by education.” Bracey Sherman said that openly involving those who have had abortions, including researchers sharing their abortion stories, can reduce classism and stigma in the academic research culture. McLemore has developed a methodology called Research Prioritization for Affected Communities; she also pointed to methods developed by the Patient-Centered Outcomes Research Institute.

McLemore suggested working with full-spectrum doulas as community-based research partners.⁸ Jarlenski called for paying community partners at parity with researchers. Bracey Sherman emphasized integrating abortion storytellers as experts on their lives and experiences (e.g., We Testify). Adler-Millstein highlighted the citizen-engagement training from the National Library of Medicine. And Hardeman said that research results need to be shared with community members, allowing people to respond with “their own words and power.”

Partnering Across Geographic and Institutional Areas

Throughout the workshop, several panelists repeated the call for researchers to partner at national, regional, and state levels, and across institutions. “If we keep to our silos in how we collect data, listen to people, and communicate with the world,” said Scrimshaw, “we are not going to get there.” Danielle Bessett (University of Cincinnati) described a feministic ethic that leads to openness around methodology and experience. Jarlenski invited junior researchers and colleagues to join in the efforts. Several presenters mentioned the importance of collaborating across state lines, particularly among permissive and restrictive states, including sharing methodology to enable support for one another’s data needs.

Increasing Investment

Many speakers expressed the need for a larger federal investment in reproductive health research but said that stigma against abortions affects priorities for organizing and funding research. O’Donnell stated that, while most abortion research is currently funded by philanthropies, NIH is beginning to realize that inconsistent resources for abortion research affect its ability to monitor people’s health care and well-being.

Jarlenski stated that federal funding is needed for research that spans the life course and uses community-engaged methods. She also pointed out the need for systematic methods for merging quantitative and qualitative data to inform policymaking.

Upholding Rigorous Standards

Finally, in order to respond proactively to what Hardeman called the “shoddy science” with which some seek to influence policymakers, researchers need to demonstrate the power of rigorous science. Jarlenski said that researchers must pilot and validate data to ensure their quality. Rather than simply dismissing unscientific methods, McLemore stated, the research community needs to retract papers with poor science and address the harms done.

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DISCLAIMER This Proceedings of a Workshop—in Brief has been prepared by Allie Boman as a factual summary of what occurred at the meeting. The statements made are those of the rapporteur or individual workshop participants and do not necessarily represent the views of all workshop participants; the planning committee; or the National Academies of Sciences, Engineering, and Medicine.

*The National Academies of Sciences, Engineering, and Medicine’s planning committees are solely responsible for organizing the workshop, identifying topics, and choosing speakers. The responsibility for the published Proceedings of a Workshop—in Brief rests with the institution.

STANDING COMMITTEE MEMBERS Claire Brindis (Chair), University of California, San Francisco; Andreia Alexander, Indiana University School of Medicine; Elizabeth Ananat, Barnard College, Columbia University and National Bureau of Economic Research; Corale L. Brierley, Brierley Consultancy, LLC; Ned Calonge, Colorado School of Public Health; Judy Chang, University of Pittsburgh School of Medicine; Ellen Wright Clayton, Vanderbilt University; Cat Dymond, Atlanta Birth Center; Michele Bratcher Goodwin, Georgetown University School of Law; Barbara Grosz, Harvard University; Vincent Guilamo-Ramos, Johns Hopkins School of Nursing; Lisa Harris, University of Michigan; Paula Johnson, Wellesley College; Justin R. Lappen, Cleveland Clinic Lerner College of Medicine and Case Western Reserve University School of Medicine; Monica McLemore, University of Washington Schools of Nursing and Public Health; Robert Moffitt, Johns Hopkins University; Rebecca R. Richards-Kortum, Rice University; Sara Rosenbaum, George Washington University; Yvette Roubideaux, Colorado School of Public Health; Alina Salganicoff, KFF; Susan Scrimshaw, University of Illinois at Chicago; LeKara Simmons, AMAZE; Melissa Simon, Northwestern University; Lisa Simpson, AcademyHealth; Tracy A. Weitz, American University and Center for American Progress; Katherine L. Wisner, Northwestern University Feinberg School of Medicine.

REVIEWERS To ensure that it meets institutional standards for quality and objectivity, this Proceedings of a Workshop—in Brief was reviewed by Amanda Dennis, Society for Family Planning, and Sonya Borrero, University of Pittsburgh. Leslie Sim, National Academies of Sciences, Engineering, and Medicine, served as the review coordinator.

SPONSOR This workshop was supported by the National Academy of Sciences W. K. Kellogg Foundation Fund.

STAFF Julie Pavlin, Senior Board Director; Ashley Bear, Board Director; Natacha Blain, Senior Board Director; Priyanka Nalamada, Program Officer; Laura DeStefano, Director of Strategic Communications & Engagement; Melissa Laitner, Senior Program Officer, Special Assistant to the President; Adaeze Okoroajuzie, Senior Program Assistant; Kavita Shah Arora, Consultant.

For additional information regarding the workshop, visit http://www.nationalacademies.org/our-work/standing-committee-on-reproductive-health-equity-and-society.

Suggested citation: National Academies of Sciences, Engineering, and Medicine. 2024. Reproductive health, equity, and society: A workshop to explore data challenges and needs in the wake of the Dobbs v. Jackson Women’s Health Organization decision: Proceedings of a workshop—in brief. Washington, DC: The National Academies Press. https://doi.org/10.17226/27523.

Health and Medicine Division Division of Behavioral and Social Sciences and Education National Academy of Medicine Policy and Global Affairs Copyright 2024 by the National Academy of Sciences. All rights reserved.