In Colombia, researchers and Indigenous communities lay the foundation for ethical data sharing and collaboration
Indigenous communities, who have long struggled to protect their land, knowledge and culture from exploitation, are now staking a claim to their health data as a necessary step on the path to better healthcare.
Many Indigenous health organizations are hindered by a lack of data collection and management capacity, which limits their ability to develop relevant programs, measure their success and secure much-needed funding.
It’s a cycle that AWB volunteer Javier Mignone of the University of Manitoba is helping to break. In 2019, AWB supported a project at the Universidad de Antioquia (U de A), in Medellin, Colombia, to create a framework for ethical collaboration between researchers and Indigenous organizations as they build their health information systems.
In Colombia, Indigenous peoples make up 2.5% of the population. Poverty and marginalization, already heavy burdens on their health and well-being, are exacerbated by climate change and conflicts over land. Children in particular suffer from preventable diseases and chronic malnutrition.
In some parts of the country, Indigenous healthcare organizations provide a safety net. Nevertheless, even the most successful organizations have trouble finding funding in Colombia’s highly privatized health sector, especially for research and evaluation.
Javier and his counterparts at the U de A’s faculty of public health organized two week-long workshops that included faculty, students and representatives of Indigenous health authorities.
Specifically, the Indigenous-run municipality of Toribio, which serves the Nasa people, was seeking support from U de A to create a data repository and a Health Situation Room–a data visualization platform.
Based on the success of the first workshop, the second one welcomed members of Anas Wayuu, a large not-for-profit health insurance company that covers the northern region of La Guajira, home to the Wayuu.
The company, which already provides access to a wide variety of services, was exploring the creation of a data repository to strengthen its capacity to produce evidence to guide programs.
Participants established guidelines to govern U de A’s research collaborations with Indigenous organizations and developed ethical data sharing agreements and data management plans between U de A, University of Manitoba and the municipality of Toribio. Participants also adapted First Nations’ ownership, control, access and possession (OCAP) principles to their own context.
The workshops were an important step towards the creation of new health information systems for organizations that serve the Nasa and Wayuu peoples. “Considering that for our organization it is important to have exact information, (the workshop) helped me to have a much clearer notion about the issues,” said one participant.
In the meantime, Universidad de Antioquia is in a position to work with Indigenous health organizations on an equal footing.
Thanks to the new collaboration framework, future research partnerships with Indigenous organizations will be built on trust and a shared goal: the realization of the right to health for Colombia’s Indigenous peoples.
Volunteer: Javier Mignone, PhD, professor, Department of Community Health Sciences, Max Rady College of Medicine, Rady Faculty of Health Sciences, University of Manitoba
Thank you to the Djavad Mowafaghian Foundation for making this project possible.