Addressing Misinformation in Labor and Delivery
By Meghan Hepp and Sarah Godlewski
The COVID-19 pandemic has left indelible marks on our society: a decline in life expectancy, a rise in remote work, a tendency toward hoarding toilet paper. But perhaps one of the most insidious impacts has been the spread and widespread acceptance of medical misinformation online. While not a new phenomenon, the pandemic accelerated this trend. COVID-19 forced the extremely technical and nuanced world of medicine into a spotlight it was ill-prepared to face. Trapped at home, and prohibited from physically checking in with their own doctors or healthcare providers, the locked down public turned to the online medical community for guidance, clarity, and trustworthy information. Unfortunately, in a developing pandemic, medical science is a constantly developing front as new information forces hypotheses to be revised and reassessed. Government health authorities were changing their recommendations weekly. Into these gaps, the COVID-19 infodemic began, infiltrating the same social media channels and leaving the public confused on who to believe. Fatal “cures” and conspiratorial origins for the disease and unfounded vaccine skepticism all found a receptive audience who were looking for some type of certainty. Largely on the other side of the pandemic now, trust in science has fared better than trust in other public institutions but it did not escape unscathed.
The continuing promulgation of medical misinformation is a plague that shows no signs of ending, unlike the worst of the COVID-19 pandemic. With more Americans turning to social media for their news and advice in all parts of their lives, this shift poses a clear safety risk: people have and will continue to die based on misinformation they have digested and held as scientific fact. This is not helped with current political leaders actively questioning the utility of life saving interventions like polio vaccines, and reintroducing debunked theories around the relationship between vaccines and autism. Perhaps nowhere is this more risky than in the field of pregnancy, labor, and delivery. And perhaps no other content poses the same combinations of challenges to moderate for a Trust and Safety team.
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Labor and delivery - frankly, pregnancy in general - are already deeply mythologized and in some places outright taboo subjects. Many pregnant people go into their pregnancies with little idea of the reality of growing another human being inside of themselves - or the risks associated with this. Only in the last decade or so have pregnancy complications like miscarriages even been talked about publicly. Traumatic delivery stories are glossed over by friends and family - both out of fear of hurting/retraumatizing the new parents, but also out of a desire to give privacy for what is a deeply personal experience. Additionally, women’s healthcare issues, especially those issues around child bearing and childbirth, are disproportionately impacted by regulatory changes along with legislative decisions at the local, state, and federal levels. Add to this the difficulty of even getting medical care in the United States and the long history of women feeling ignored and their pain being deprioritized by medical professionals. It is no wonder that women, already in this vulnerable and susceptible state, seek out information and guidance from a number of other places. In seeking to find comfort for their fear, their uncertainty, they move to online resources, where the information ecosystem is often polluted. These women need access to quality information, but they may not have the digital or scientific literacy - or frankly the mental capacity - to sift through the information and determine truth from fiction.
It is amidst this backdrop that the Integrity Institute hosted a conversation on online misinformation, with a focus on women’s healthcare in the realms of labor and delivery. The Institute was fortunate enough to include OB/GYN Dr. Jasmine Rah in the conversation to discuss how misinformation about women’s medical procedures is having an increasing impact on labor and delivery rooms and influencing the dynamics between patients and their doctors, nurses, and midwives. The conversation also explored what steps Trust & Safety teams can take to mitigate misinformation in women’s healthcare and amplify credible, evidence-based sources. Combating this misinformation epidemic will take coordinated efforts from both the medical establishment and Trust & Safety professionals.
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On the medical side, nurses, doctors, midwives, and doulas need to intervene early to give patients resources and information often. Combating misinformation regarding vaccines and interventions during childbirth (such as the placement of the fetal scalp electrode and the Vitamin K shot, which mitigates the risk of severe birth complications) directly in person may insulate expectant parents from falling to pseudoscience when they see those procedures under fire on social media. Other options for the medical community include:
Partner with trusted influencers, particularly reputable healthcare providers, clinical researchers and public health professionals, on various platforms to build credibility and amplify accurate information.
Proactively address misinformation by delivering evidence-based education when providing patient care and integrate trauma informed principles into the discussion.
Collaborate with trusted moderators to build community both in person and online to monitor trends, assist with fact checking efforts, and identify content red flags.
Advocate for professional healthcare organizations to launch media literacy and health misinformation awareness campaigns targeted at pregnant individuals, conduct research into health misinformation outcomes, and offer digital training workshops that assist providers in navigating online spaces.
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On the platform side, Trust & Safety teams have to navigate this area carefully so as to not marginalize an already vulnerable and under attack population. Taking content down, banning individuals will not halt the spread of this misinformation and may alienate the communities we are trying to help. Starting from the design of platforms themselves, platforms can move away from the current engagement based ranking systems which are employed on almost every major social media platform. The Integrity Institute’s own research shows how this model creates prime environments for the viral spread of misinformation. The growth of Bluesky, Mastodon, and other federated social media platforms offer the perfect moment to experiment and see if other types of platform design can mitigate the worst of these viral outbreaks. Within the existing platforms, Trust & Safety content moderation policies can include more specific and nuanced enforcement for labor and pregnancy medical misinformation. Categorizing the different types of misinformation in a taxonomy of harms will help Trust & Safety teams better separate the wrong-headed from the truly harmful and adjust enforcement accordingly. Additionally, Trust & Safety teams can help facilitate partnerships between the pregnancy communities on their platforms and trusted medical professionals to do things like AMAs, and other information exchanges.
Information can also be shared between Trust & Safety policy writers and the medical and birthworker community, following the model many anti-racism organizations used to engage with platforms to expand the platform definitions of discrimination and hate speech. Medical professionals and birthworkers can give Trust & Safety policy writers the talking points they need to navigate the deeply politicized world of pregnancy content and defend their policy carve outs and enforcement exemptions to company leadership - differentiating labor misinformation from what might be considered as pro-abortion propaganda. In turn, policy authors can help doctors, nurses, midwives, and doulas navigate and understand a platform’s public information about content rules, in addition to how to appeal decisions if their post is taken down. Just greater awareness of the issue within the team will help Trust & Safety teams avoid over-enforcement and know to specifically test their AI content moderation tools with labor and delivery examples.
Trust & Safety Teams might consider:
Drafting a comprehensive guide for medical professionals to effectively share educational content online, master platform tools, and safeguard privacy and professional integrity.
Conducting outreach to medical and birthworker communities on their platforms to stay on top of any concerning trends and ensure the platform is working in ways that benefit their communities.
Developing a taxonomy of harms specific to women's reproductive health misinformation with enforcement that aligns with the risk of the misinformation (labeling the wrongheaded, reducing the reach of the truly dangerous)
Crafting Nuanced misinformation policies that differentiate between organized misinformation dealers and individuals
Considering changes to platform design that are documented to reduce misinformation, such as moving away from engagement-based ranking and dampening highly viral content which links to nonauthoritative or low-pagerank sources and conversely highlighting more trustworthy sources.
Social media literacy training to help non-practitioners understand how content moderation is done at scale, how engagement based ranking systems work, how to employ critical thinking and misinformation awareness when consuming content online, and best practices for maintaining personal privacy and security.
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The spread of misinformation in women’s healthcare is an issue that necessitates systemic change and a multidisciplinary approach. Platforms used to communicate and seek information are not neutral spaces, they play a central role in shaping our perceptions of health and wellness. It is imperative that Trust & Safety teams consider platform design, policies governing content, and liaise with healthcare workers. This serves as a call to action for improving how medical information is shared online, ensuring that truth is accessible and prioritized to empower women in making critical decisions regarding labor and birth.