Women’s health data collaborative analyzes problems

Emma Swepston from Metriarch, a women’s health data collaborative, talks about the “uncomfortable” subject of women’s health.

The George Kaiser Family Foundation founded Take Control Initiative (TCI) to improve access to contraception and reproductive health education. The group expands services to offer equitable access to contraceptive methods that are best for each individual and family. Through breaking down socioeconomic barriers, TCI hopes to enact a change for women in Tulsa: one where any woman can learn and control her health.

When it comes to the lack of knowledge in women’s health, TCI’s data and policy director Emma Swepston realizes how difficult it was to have a conversation on women’s wealth without spiraling into deeply controversial, unrelated topics.

“People get really uncomfortable when it comes to women’s health,” Swepston says. “The reality is that there is nothing inherently bad about being a woman. Our health involves more than the lower half of our anatomy.”

While data is publicly available regarding women’s health and welfare, many non-profits and research groups lack the infrastructure to provide information in a means that is both convenient and understandable. If someone does not know how to “run the query” or go to the exact database, any available data can be incorrect or invalid. According to Swepston, from an infrastructure viewpoint, when queries are sent, it is necessary to have insider knowledge.

Metriarch, a women’s health collaborative that works with TCI, originates from the pervasive problem of data illiteracy. The group wants to generate conversations around women’s health, inherent dignity and essential security for women in their families. Through curated data reports, a forthcoming interactive web tool and in-person events, Metriarch hopes they can build positive dialogue in the community about women’s health.

In response to the need for convenient, understandable information, Metriarch released a Data Lookbook, which offers comprehensive summaries of data that is commonly referenced in discussions about women’s health and well-being. The information in the Lookbook has been conducted and overseen by experts in their fields, and it is designed for maximum accessibility. The overall goal of the project was to incorporate the lived experiences of all Oklahoma women, not simply those who are the easiest to measure.

“With rape and sexual violence statistics, I’ve analyzed some data that hasn’t been collected since 2012,” Swepston says. “You’d think we care about women and sexual violence, but priorities exist in the things that we measure.”

As documented by the Lookbook, Oklahoma ranks highest in the nation for completed or attempted forced penetration. Swepston believes this statistic coincides with an overall problem in education.

“For some reason, we are not comfortable with talking about sexual violence,” she says, “Oor maybe women don’t know what constitutes rape or sexual violence.”

Then, with marginalized groups, the statistics for sexual violence is much worse. The Lookbook’s 2012 data on sexual violence did not include information regarding how indigenous, disabled, low-income or LGBTQ+ populations were affected. Through supplemental data collection, research has found these groups “reported a higher than average incidence of sexual violence.”

There are troubling statistics that follow this: 47 percent of transgender people report an incident of sexual assault in their lifetime, and transgender people of color report higher rates; moreover, 67 percent of transgender indigenous people report being sexually assaulted in their lifetime.

“There’s a historic precedent of sexism that is layered into the structures and institutions of our world, especially when you layer racial and socioeconomic disparities in women’s health,” Swepston reports.

According to the Lookbook, black and indigenous women are three times more likely to experience maternal mortality, and black infants are “twice as likely to die than their white counterparts.” A black woman with a PhHD is more likely to die from childbirth than a white woman who comes from a lower income background and has less educational attainment. And, ultimately, this disparity is preventable — it is the lack of consistent health care and access to treatment that perpetuates this issue.

Metriatch believes disparities still exist. Structural racism hurts both the ability to collect data and the overall quality of health care. There are publicly available datasets for the majority of the population, but for people who “exist in the margins,” data falls short — there is no easy solution to find information that encompasses all aspects of a person’s identity.

Historical trauma may act as a factor in why women of color in Oklahoma bear inequity. The Lookbook explains that: Indigenous women still experience the impact of colonization, black women in Tulsa “still labor to repair the economic devastation” caused by the 1921 Race Massacre, black trans women are more likely to live below the poverty level “with 34 percent living in extreme poverty nationwide,” and one in every four Latinx women lives in poverty.

The consequences can be felt throughout the health outcomes of the population.
Historical trauma and implicit bias aside, there’s another reason why there is a huge gap in the data: public and private entities who work to collect, track and organize data are under-resourced. Swepston finds that while these workers are performing their due diligence to make sure the data they collect is valid, there are other complications that arise with overworked agencies.

“Maybe they’re unable to do broader collection,” she offers, “Or they don’t have time to look at other attributes on a survey. Maybe they don’t have the time to put information in a data system that is easily accessible to the public.”

Still, Swepston concedes that “our values are collected in the things we measure.” Marginalized people are more likely to do inclusive data collection efforts, which can put pressure on the people who have the power to augment existing efforts to include a more comprehensive picture of the American populous.

Oklahoma may empirically struggle to keep up with other states in its education of women’s health and dignity, but things are improving. The Lookbook finds that the Oklahoma Legislature passed a bill in 2019 establishing a Maternal Mortality Review Committee (MMRC).

Beginning this month, the MMRC will “begin reviewing, identifying and providing recommendations to address the underlying, preventable causes contributing to the death of Oklahoma mothers.”

Moreover, there has been a 12 percent increase in voter participation in 2018. Oklahoma’s teen birth rate is the fastest falling in the country. Political representation in the state’s legislature has increased.

“Much of this has to do with the work of non-profits, state entities and broader collaboratives that focus on specific domains,” Swepston says. “This is not happening by osmosis. This is intentional action.”

Groups like Metriarch and TCI work to overcome the gap in women’s health education by overall promoting security, raising awareness of socioeconomic struggles and providing a safe space to learn more about one’s body. Overall, Swepston believes that it is important for people to look at the data because an increased understanding provides educational movements over all of the different intersections of women’s health. Information can be used for good, she believes, and it can help shape the cultural landscape of Tulsa.

Information on Metriarch and their Lookbook can be found on their website at https://www.metriarchok.org/. TCI can be accessed at https://www.takecontrolinitiative.org/.

Post Author: Anna Johns