How We Developed Explore ECHORN

We used a participatory informatics approach to build Explore ECHORN. This approach applies the principles from community-based participatory research to the best practices in data management and data sharing. We know that Caribbean data is often subsumed into Latin American countries for reporting. This practice masks the divergence of Caribbean populations away from reductions in non-communicable diseases and towards increased illness and death. Participatory informatics directly addresses inequities in data sharing and makes data accessible outside of the scientific community.

Our participatory approach included partnerships in planning, usability tests, and member checking with stakeholders. The project was led by Dr. Karen Wang and Dr. Ian Hambleton. Dr. Wang is a physician researcher at Yale University and Dr. Ian Hambleton is a biostatistician at the University of the West Indies (Barbados). They worked closely with the consortium data sharing workgroup to determine what data should be included in the platform, how that data might be useful to people, and whether restrictions on data usage should be put in place. These discussions were guided by the ‘FAIR’ principles of data stewardship, which state that data should be findable, accessible, interoperable, and reusable.

Our fellows conducted multiple rounds of usability tests with consortium members and Caribbean residents. Usability tests assess people’s experiences using a web site or platform. The tests included observing how people searched the site, how people understood our labels and instructions, and technical barriers that people encountered. The tests were conducted by our fellows, working under the guidance of Dr. Terika McCall, a researcher specializing in user-centered design and usability testing of digital health tools.

We applied the feedback from the usability tests to our platform. We changed data labels, added new functions, incorporated more instructions, and adjusted the layout. Once these edits were complete we held a member checking session with our stakeholders to ensure that Explore ECHORN met their needs and expectations. 

We continue to welcome feedback on the platform. To share your experiences or to learn more about our approach, please email ecc@yale.edu