Young Nicaraguan activist Natalia Norori is using her skills and experience in open health data to not only measure the true impact of Covid-19 on vulnerable groups, but also aiming at some point to measure the environmental, economical, and social shockwaves that come with them.
In 2019 Norori started Health Data Sharing Is Caring, a project aiming to raise awareness about the lack of representation of vulnerable populations in healthcare datasets and the impact this has on Global Health.
On top of her day-job as a researcher at Open Access Button, a non-profit helping people freely access academic research behind paywalls, she is now turning those skills to help in the fight against Covid-19.
“We’ve learned from past public health emergencies the consequences of not sharing healthcare research and data, including delays in treatment discovery and disease management,” she said, “but never in a million years, I would have imagined that the research we conducted would come useful to help tackle a pandemic.”
Norori says during the last few months she’s been applying those lessons to contribute to projects that rely on open research practices to respond to Covid-19.
She says that in healthcare, access to one single research paper, or one single data type can make the difference between the cure for a pandemic, or thousands of deaths.
“There is also a critical need for policies that demand the implementation of disease control plans that leave no one behind,” she said, “By creating data that captures the healthcare needs of the poor, immigrants, marginalized women, indigenous people, people with disabilities, and other vulnerable populations, we will be in a better position to reform how we respond to public health emergencies.
Norori says she expects to make region-specific, culturally oriented versions of the Health Data Sharing is Caring tools available in the upcoming months to better support those who are capturing Covid-19- related data.
The hope is that new tools could help Nicaraguan citizens build standardized prototypes to capture public health data that goes beyond the number of cases and deaths to help prepare for future waves of Covid-19 and other epidemics, while also measuring the environmental, economical, and social shockwaves that come with them.
Norori says socio-economic inequalities in Latin America have been exacerbated by Covid-19, which has pushed already weakened local healthcare systems to the verge of collapse across the region.
“Advances in public health throughout the decades have been accelerated by research based on data, and in the global south, healthcare-related data is indispensable for modeling disease evolution and creating projections,” Norori said.
She says the lack of data infrastructure, standardized frameworks, and transparency prevent Latin America from truly measuring how public health outbreaks impact the hardest-hit populations, who are often invisible in datasets and consequently, in disease response plans.
“By pushing for the uptake of digital data sharing standards and solutions we will be better positioned to identify and protect vulnerable populations during this and future public health emergencies.”
Norori was born and raised in Nicaragua by parents who worked hard to give her and her brothers access to a privilege she says not many Nicaraguans have: quality education and healthcare.
“Back when we were kids my mom worked as the Community Health Program Manager at Peacecorps, and my dad used to take us on trips to very remote towns for us to learn and value her work, and come face to face with the poverty and inequalities experienced by people in our own country,” she said adding that what she saw on those trips helped her see the important role nonprofits and volunteers play in healthcare and inspired her to pursue a vocation in global health.
Norori is part of the latest iteration of the Women Deliver Young Leaders Program.
There are 300 young people in this cohort, including 49 people from 20 countries in Latin America and the Caribbean.
Women Deliver, an NGO championing gender equality and the health and rights of girls and women has, since 2010, reached 1,000 young advocates from 148 countries.
Joinng Norori in the latest cohort is a young woman from Brazil: 22-year-old Ester Borges Santos, who is a researcher at Brazilian web governance and freedom of speech think-tank InternetLab and a computer teacher and coordinator at NGO Minas Programam.
Borges and her colleagues at Brazillian NGO Minas Programam run classes for girls from Brazil, especially those from disadvantaged backgrounds.