See below for Dr. McLemore’s remarks as prepared. The full recording of the March 6 webinar is available here.
Good afternoon, everybody. I'm Monica McLemore. I use she and her pronouns and I'm really grateful to get an opportunity to talk with you about something that is near and dear to my heart: reproductive justice and community-engaged research in the context of Dobbs.
First, let me begin with the harms—or the potential harms—of health services research. Our scientific community has several responsibilities that go beyond the documentation of harm and the documentation of our current moment. There are several domains that we need to pay attention to that align themselves with community engagement methods: maintaining an accurate scientific record, training the future workforce, and enduring trust and reducing misinformation and disinformation.
I don't have to tell this audience about the situation of in-vitro fertilization in Alabama, or about—putting my Health Equity editor-in-chief hat on— that Sage retracted three articles that were cited in the upcoming Supreme Court case on March 26 that were published in the journal, Health Services Research and Managerial Epidemiology.:
- “A Longitudinal Cohort Study of Emergency Room Utilization Following Mifepristone Chemical and Surgical Abortions, 1999–2015” (2021)
- “A Post Hoc Exploratory Analysis: Induced Abortion Complications Mistaken for Miscarriage in the Emergency Room are a Risk Factor for Hospitalization” (2022)
- “Doctors Who Perform Abortions: Their Characteristics and Patterns of Holding and Using Hospital Privileges” (2019)
We as a scientific community have let some things go beyond our scientific expertise that ended up in cases that will determine whether or not mifepristone will be nationally available in the United States. So, clearly, there are some things we need to think about.
Community-Partnered Research Approaches
Why is community engagement so important? As part of the preparation for our workshop, I asked my good friend Dr. Terri-Ann Thompson, whose quote you heard earlier in Dr. Simpson's opening comments, who works at Ibis Reproductive Health, to join me in a discussion about health services researchers and thinking about community-engaged work in the context of Dobbs. Some of the key things I want to lift up and highlight for this audience, that might not be obvious, are really important for us to be able to ethically do our work and to not to continue to cause harm:
The first is we need to call out and not perpetuate abortion stigma. The language we use matters and we've been lied to for the last 50 years. This notion that we can't clearly state that all pregnancies end, they don’t all end in birth, and that abortion is a legitimate outcome of pregnancy. We need to not continue to use perpetuating language like pro-choice, pro-life, pro-abortion. These are not helpful.
We have to have a community engaged research framework. There are several that exist, whether you think about community-based participatory action research or you think about research prioritization of affected communities—both approaches that I've used and Dr. Thompson has used. You can’t just helicopter into a field and decide that, you know, abortion is the hot place and post-Dobbs is going to be the place where you want to move your research, while neglecting the important work that has been done in reproductive health, rights, and justice to define methods that are ethically sound and community-accountable for the research that you want to be able to conduct.
Third of all, we need to assess and understand regional, local, and national community research capacity. It is very important that we invest in that capacity and not exclusively extract or try to partner. In this moment, being able to conduct research either with abortion funds or abortion clinics or abortion researchers—understand that we've been doing this work for a very long time. So the idea of the excitement and the interest or wanting to engage around this research: partnership is going to be crucial (and I know our good colleague Dr. Jenny O'Donnell is going to talk about that).
The other thing we have to recognize is there is truth and reconciliation and rupture and repair that needs to also have some attention. You can't just go into community or you can't just want to be able to helicopter into a field and not recognize the harm that's been caused. So maybe community engagement actually really means acknowledging that harm has occurred and creating community and creating relationship in order to be able to co-design studies in the future.
Finally, we need to consider some dissemination tools that go beyond our journal articles or that sit behind firewalls and paywalls, getting back to this combating misinformation and disinformation. We saw yesterday the power of social media and how people connect when Meta went down on Super Tuesday. This idea that for other people who were really scrambling and other community-based organizations that were scrambling to use other tools—we have to start thinking really differently about how we disseminate fact-based and evidence-based information.
We have to think about the use of infographics. We have to think about the use of other tools that communities we serve use, to be able to communicate. What digital assets can come from our data and how can we think differently about use, of explaining it to the public when we think about our research and think about our work?
Finally, I want to close out in in saying that I have been doing a lot of thinking and a lot of writing about retrofitting and reforming and reimagining the way that we conduct research (and you can find those papers):
- Retrofit: We want to define and live our values within the conduct of our research both with our teams and the kinds of research questions that we ask. This is crucial for visibility, for accountability, for being seen, being heard.
- Reform: We're going to reform our research programs. We really want to embrace accountability. That power has been defined and described and we know that we're going to share it and we're going to wield it in partnership with the people that we serve.
- Reimagine: An authentic engagement means radically going beyond the traditional tools of science and really thinking about co-presentation of our co-developed research. It means bringing community voice to funders and funders to community. It means reparations of humans, money, space, time, reputation to really be able to build out a research agenda and to amplify a research agenda that has community oversight as well as their excitement.
We are currently in uncharted territory with Dobbs, and we need to remember Roe was never enough anyway as reproductive justice. People have taught us that was never the best that we could get—that for pregnant-capable people in our society to have full rights as citizens, we need to ensure their capacity to be the experts in their own lives and that includes being experts in their own lives in the scientific enterprise.
In our understanding of this, we can then become the true research partners that we need to envision new kinds of care environments and interventions that are necessary to reduce harm and to hopefully be able to operationalize optimal health outcomes.