Giving data a face
Stories are powerful, being great allies when explaining the significance of results. However, combining data reliability with emotional engagement requires sensitivity.
In the initial meeting with Professor Rosa Domingues' team to discuss a dashboard for monitoring the vulnerability of Brazilian women to maternal mortality, they presented data from their discoveries with the passion scientists often have when talking about their research.
Observatório Obstétrico, 2013 to 2021
Using my vulnerability to make data more impactful
I needed time to digest the information. I was five months pregnant when the pandemic hit. My daughter was born during the first wave of deaths in my city. The fear I felt is hard to describe, something we usually see in movies. Pregnant women were not considered a high-risk group for most of the period. Confronting these numbers felt like a nightmare. I have had the privilege to survive, but COVID-19 killed almost as many as all the other causes of maternal mortality combined: hypertension, abortion, and hemorrhage, among others.
The story that 'The vast majority of maternal deaths occur due to preventable causes, and they are a violation of human rights.' needed to be told beyond a dashboard.
But why did Brazil plateau at a rate twice as high as the goal set by WHO?
Maternal death is a rare event, and before the pandemic, nearly half of Brazilian municipalities had no cases. One significant contribution of their research is the understanding that these municipalities do not have a privileged healthcare system for pregnant women. They are small municipalities — with a minuscule chance of a rare event occurring. Since preventing maternal mortality in Brazil currently involves investigating the causes of recent deaths, how could these municipalities understand they are vulnerable to an imminent case if they have no past ones to compare to?
And, most importantly, how can a stakeholder, a policy maker, and the population understand that maternal death is not a fatality?
But, that it is very likely, preventable?
Bridging Theory and Communication
As if I wasn't emotional enough about the topic, the research group sent us a series of maternal death investigation cases used for a course on surveillance of maternal, infant, and fetal death for medical students. After crying my heart out, I realized there was potential for emotional engagement by following a woman's story instead of only looking at data.
The women we read about were not just statistics. Instead, they were women who should have been holding their newborn in their arms, struggling to breastfeed, crying from exhaustion, or dealing with the jealousy of their older children. Can we tell all the signs of a woman’s vulnerability through a story? And can we connect this woman's life with the indicators on a maternal health surveillance dashboard?
Using the theoretical model, Professor Rosa's team identified a set of indicators available in Brazilian information systems. It structures how the indicators are presented on the dashboard and guides the life story we want to tell.
One of the challenges for this project was that we were addressing audiences with different needs, such as:
Providing metrics for policymakers to go beyond maternal deaths as an indicator of success;
Providing access to those who already work with maternal death prevention, like researchers;
Explaining the relevance of the topic to Journalists, medical students, and researchers;
Telling a story so nurses, students, and the population can understand their vulnerability.
Below, you can find our endless Miro explorations to fit all audience’s needs into deliverables and solutions.
Miro board with a combination of story structure, contextualization report, and dashboard. This is the result of almost two years of co-creations with the researcher teams on designing and developing dashboards and data visualizations.
In collaboration with Professor Rosa Domingues' and Professor Agatha Rodrigues' teams, who took charge of developing the dashboard, we defined a multi-level communication approach:
A dashboard focused on municipal stakeholders with two main goals:
Decision-making: the presentation of a summarized view of the indicators per municipality, grouping the most critical information to provide a quick diagnosis of women's vulnerability in that municipality;
Exploration: successive layers of in-depth exploration of the indicators based on the theoretical model;
An Explanatory report on the situation in Brazil for each indicator, targeting researchers, teachers, journalists, and the public interested in delving into the content; and
Aparecida's Story: a fictional (but genuine) story of how many Brazilian women's living and health conditions impact their vulnerability to maternal mortality.
Below are some of our low-resolution processes for writing and defining the dashboard, the report, and the story.
Dashboard exploration flow structure (in Portuguese)
Modular exploration structure, from the story to the dashboard, with seven blocks (according to the theoretical model) and four levels of exploration each (story, context, list of indicators, report, and dashboard).
The reader can learn through the story and monitor the data with the indicators available on the dashboard.
Evoking Emotional engagement: A sensitive dialogue
Unlike many other stories, Aparecida does not die. She experiences what is known as a maternal near-miss: a woman who almost dies but survives a severe complication during pregnancy, childbirth, or postpartum. Which, although much more frequent than maternal death, has the same determinants. After reading the first version, our designer Vitória suggested a change of perspective: 'It feels like one of those war movies where we feel there's no hope, and nothing can be done. What if she didn't die?'
Emotions are powerful things. When we use data to add credibility and impact to a story meant to make us feel something, we must be intentional about what those feelings may be.
What we did not want was the feeling that this woman was destined for a life of unhappiness and early death due to her skin color and economic status. Aparecida is a woman in charge of her choices who found love and has a beautiful family.
We want people to feel hopeful and believe that change is possible. But we added her best friend to the story, who experienced something similar and did not survive, as a reminder of many who, by having these social determinants, don't make it.
Her story, life, and portrait were painted by the illustrator Nicolas Noel, who was tasked with interpreting each of the critical moments in Aparecida's journey and tied to the theoretical model: a woman who should survive, just like me and you.
Sometimes, the simplest deliverables are the most impactful ones
This project had many limitations, but our evident passion for the topic, the research, and the final product had an incredible response from the scientific community. Its relevance and success can be better described through some comments from more than 200 participants who took part in the launch of the Maternal Health Surveillance Dashboard and Aparecida's Story:
You can read Aparecida's Story and explore the Maternal Health Surveillance Dashboard (in Portuguese) here.
May her story ignite our emotions so that the data can generate the needed change.
Contact us if you want your data to speak the language your audience needs.