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Enhancing Health Data Collection in Appalachia
By Bridging Technological and Cultural Gaps
When a major health study in Appalachia was at risk of failing, the initial diagnosis was simple: illiteracy. However, through deep community engagement, we uncovered a more complex reality. Participants weren't just struggling with reading - they were feeling undervalued, distrusting of the research process, and overwhelmed by complex academic language.
Designing for dignity
We created a tablet application that put control back in participants' hands. Through features like private audio options, simplified language, and self-paced sessions, we transformed an intimidating 119-question survey into an empowering experience. Local staff members became part of the solution, building bridges between the research team and their own communities.
Simplifying academic language into Conversational sound bites:
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I know someone who I see or talk to often with whom I would feel perfectly comfortable talking about problems I might have budgeting my time between school and my social life.
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If I need more time for school or friends I know someone I can talk to.
measuring transformation
What began as a data collection challenge evolved into a story of community empowerment. Survey completion rates soared, and data reliability improved dramatically. More importantly, we saw a fundamental shift in participant engagement - from reluctant subjects to active research partners. Data that once took weeks to process was now available within 12 hours, securing the project's funding future while maintaining the highest standards of privacy and accuracy.
satisfaction rating
Completed Surveys
Automating Onboarding
Onboarding was a complex task. When participants arrived at the clinic, the clinic staff had to confirm identity, assign a tablet computer and headphones, and build a list of their family members, assign relationship codes, and draw a three generation pedigree for each person.
We had already built a mobile app that had the self-report questionnaires, and built a flow to allow participants to onboard themselves.
We then added alerts to the tablets so that users were directed to their exams and freed up clinicians to assist users.
TRANSFORMING BARRIERS INTO OPPORTUNITIES
Rather than simply digitizing paper forms, we saw an opportunity to rebuild trust between researchers and participants. By conducting field studies within communities, observing daily activities, and listening to both participants and clinical staff, we developed a deeper understanding of the true challenges facing this crucial health research.
BUILDING LASTING CONNECTIONS
The technical solution - a voice-guided, offline-capable tablet app - solved immediate data collection needs. But the real breakthrough came from our approach to implementation. By employing local staff and designing for dignity, we transformed the relationship between researchers and participants. Participants gained confidence not just in using the technology, but in their vital role in advancing health research.
LESSONS IN COMMUNITY-LED INNOVATION
This project taught us that true accessibility isn't just about interface design - it's about understanding and respecting community needs. Success came from:
- Looking beyond surface-level problems to uncover deeper trust issues
- Empowering participants through privacy and self-paced engagement
- Building bridges through local community members
- Designing technology that serves human dignity
LOOKING FORWARD
The impact extends beyond improved data collection. We've created a model for conducting inclusive health research that respects community dignity while meeting rigorous scientific standards. This approach continues to inform how research institutions engage with communities, ensuring that technology serves as a bridge rather than a barrier.
