Insights Blog

How Data is Being Used to End the Worst Injury You’ve Never Heard Of

The latest findings from Operation Fistula and the Viz5 project

Blog snapshot:

  • Helen Davies, Chief of Staff at Operation Fistula, takes a look at fresh insights from Viz 5 where the focus for May was visualizing the challenge posed by obstetric fistula
  • To hear more from Seth Cochran, Founder & CEO of Operation Fistula, check out our recent Data Xpresso webinar here 

Exasol’s non-profit partner, Operation Fistula, is leading Viz5 – a bold new data project to visualize gender equality. We’ve been featuring stories on Viz5 since it launched on International Women’s Day this year.

In May, the data Viz5 chose to highlight featured obstetric fistula because on Saturday, May 23rd, it was International Day to End Obstetric Fistula (IDEOF).

As the organization leading the work to visualize gender equality, Operation Fistula wanted to engage the Viz5 and #MakeoverMonday communities to assist them in their preparations for IDEOF, by producing Loading...data visualizations that could help them raise awareness and mobilize action to deliver a fistula free world. In this blog, we’ll give you context and information on the data, and also share some of the Loading...data visualizations that were produced for IDEOF.

Context

With childbirth, inequality languishes. Millions of women today still give birth the way their ancestors gave birth hundreds of years ago: No doctor, no midwife. No access to pain relief, no medicine to thwart infection. No running water, no soap, no electricity. No one to turn to if something goes wrong.

“About 800 women die from pregnancy or childbirth-related complications around the world every day. For every woman who dies of maternal related causes, it is estimated that at least 20 women experience a maternal morbidity, one of the most severe forms of which is obstetric fistula.” – United Nations

The circumstances faced by women in poor countries are nearly unimaginable to those who have given birth in rich countries. This is the reality that allows the scourge of obstetric fistula to endure even though we possess all the necessary tools of both prevention and treatment.

What is obstetric fistula?

Obstetric fistula is a childbirth injury that happens when a woman can’t access the medical help she needs while in labor. After losing her baby to stillbirth, the woman is left with a stigmatizing injury that devastates her life.

Obstetric fistula is caused when women go into obstructed labor, meaning the baby can’t pass normally through the birth canal. Women may spend days in labor without adequate medical attention, enduring excruciating pain. If the baby can’t be born after so much time has passed, and a hospital is not within reach, often both mother and baby will die.

Occasionally, though, the mother will survive. But the trauma of her long labor will have caused tissue death, leaving her with a hole through which urine or faeces (or sometimes both) will leak uncontrollably. This is a fistula.

“Obstetric fistula, a childbirth injury caused by prolonged, obstructed labor without prompt medical attention, is silently robbing millions of women and girls of their health, hope and dignity.” — Dr. Natalia Kanem, Executive Director, UNFPA

At Operation Fistula, we describe obstetric fistula as “the worst thing you’ve never heard of,” because so many people – even in areas where it’s prevalent – don’t understand why it happens, or are too embarrassed to talk about it.

It is in large part because of this that fistula is little-known in high-income countries, where many people have never even heard of it. Yet, more than 1 million women globally are currently living with fistula.

The surgery to repair a fistula was pioneered 150 years ago. So, between preventative measures and surgical repairs, fistula has faded from memory in high-income countries (though it does still rarely happen in the USA and Europe).

It can take little more than an hour to correct this burdensome injury that – untreated – can otherwise impact decades of a woman’s life. But most of the women in low-income, low-resource countries will never come into contact with someone who can help restore them to good health.

In May, the work of Viz5 sought to help Operation Fistula in their work to reverse this paradigm by mobilizing action and increasing awareness for IDEOF.

About the Data

Operation Fistula shared a subset of anonymized patient data that was provided by their partner surgeons in Madagascar between February 2018 and February 2020. It is important to note that the patients, who own their data, consented to having Operation Fistula and partners use their anonymized data in their efforts to better understand and prevent fistula.

The dataset revealed myriad insights into the horror of fistula. A total of 468 anonymized patient records were included in the dataset. These records are not representative of all the patients treated by Operation Fistula’s partner surgeons during this time period, rather Operation Fistula shared an anonymized subset of these records for visualization. Each row in the dataset that was shared represented an individual patient.

Each patient included in the data has her own story, one which cannot be reduced to a set of numbers and fields. However, by sharing this data set, Operation Fistula hoped to provide some insight into the lives of the women; both the suffering they have endured, and the relief and hope provided by fistula surgery.

Viz5 Loading...Data Visualizations

This complex and multifaceted data was approached with deep sensitivity by the #MakeoverMonday and Viz5 communities. Operation Fistula was particularly impressed by those visualizations that worked to tell the stories of each individual woman’s life with fistula, their journey to care, and the impact of their treatment.
Today, we wanted to share some of the visualizations that we felt highlighted the data for maximum impact, and that will be used to assist Operation Fistula in their mission to end fistula:

Viz Author – David Borczuk

See what made it into the Viz Top 10 from Makeover Monday

Find out more

Operation Fistula’s Founder & CEO, Seth Cochran, recently joined Exasol’s Data Xpresso webinar with Eva Murray, Technology Evangelist at Exasol, and Helena Schwenk, Technology Evangelist at Exasol, to talk in more depth about the work being done – check it out here!

Sign up to join the viz5 community at viz5.org!

Keep watch for updates on the project by following @OpFistula, @TriMyData, @sethcochran, and #Viz5.

By Helen Davies, Chief of Staff, Operation Fistula

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