Human Rights

In Colombia, a host of factors including poverty, ongoing droughts, geographic distances, language and cultural differences, has led to wide health disparities between Indigenous and non-Indigenous populations.  Efforts to close the gap are hampered by the fact that Indigenous patients are nearly invisible in the population health data.

The University of Antioquia, with the help of AWB volunteer, Dr. Javier Mignone, Professor of Community Health Sciences from the University of Manitoba, is taking up the challenge to close the gap by developing a national health data repository that is designed to work with datasets from Indigenous health organizations.

“As universities we can do a lot,” said Javier who is a professor at the University of Manitoba’s Max Rady School of Medicine. “We’re not thinking of research as something universities do, but that we do in partnership, particularly with Indigenous organizations.”

The new system, called Unidad de Gestión de Datos Poblaciones (UGDP), under the National
Faculty of Public Health, is modelled on the Manitoba Center for Health Policy, which contains data for virtually the entire population of Manitoba, and has safeguards to protect Indigenous data from misuse.

In fact, researchers have already piloted the system using data from the Wayuu health insurance organization, Anas Wayuu, which has more than 150,000 beneficiaries.

During a recent trip in 2022, Javier helped design a study in partnership with Anas Wayuu, the Wayuu health insurance organization, using data from Wayuu clients undergoing treatment for breast cancer to see if staying in an Indigenous-run hostel had an impact on their access to care.

Typically, patients are forced to travel long distances for treatment and, weakened by chemo, head back to their villages, where no follow up care is available. Culturally adapted hostels offer interpreters, access to traditional food and medicine, and proximity to the hospital where patients can be monitored. Programs that offer a respectful, integrated approach to care can make all the difference for a Wayuu cancer patient.

Researchers were able to demonstrate, using data from 2014-2019, that intercultural hostels were significantly associated with increased access to cancer specialists. This example indicates how data can help an Indigenous organization develop evidence-based programs that build resilience while responding to urgent needs.

Going forward, the challenge is to improve the quality of data Indigenous health organizations share with the university. Since an AWB project led by Javier in 2019 (add link), the National Faculty of Public Health has been providing technical support and training staff at Anas Wayuu and other Indigenous health organizations to get a better handle on their data.

Through research and capacity-building, the University is building trust and laying the foundation for collaborations that respect the Wayuu’s inherent right to self-determination and data sovereignty through oversight of their own data.

“Basically, projects like this can strengthen the self-governance of Indigenous health organizations,” said Javier. “We were able to combine both research and capacity building, with a direct tangible benefit to the organization we are collaborating with.”

With the support of AWB volunteer, Dr. Javier Mignone, the University of Antioquia now has the tools to support Indigenous communities with meaningful and culturally relevant research while they forge their own path to better health.

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