Researchers who Bridge

My research position with Gonzalo has allowed me to explore my passion for E-health. Together, we study how individuals with chronic health conditions utilize the Internet to gain psychosocial support for their illness(es). From a social justice perspective, technology has the ability to bridge health disparities such as access to care and health literacy. As more and more communities across the globe acquire Internet access, patients are becoming more informed consumers of their care. The empowered patient has the capacity to bridge issues of power and mentor others; as such, epidemiological trends in E-health could quite literally change the face of medicine and decrease health disparities.

Our research has led us to literature chronicling online patient communities (OPCs), or groups of people with similar health conditions who meet regularly online to share information and provide emotional support. These communities are everywhere – from Facebook to PatientsLikeMe to Twitter to WhatsApp – and they span globally. Despite this, the literature on the topic is often Anglo-centric, coming from North America and Europe. Not well understood is how OPCs bridge cultures and cross borders. In an effort to learn more, we met today with a local physician, Camilo, who also works as an E-health consultant for a medical software company.

Together, we engaged in a conversation about how Chileans conceptualize E-health and what trends are emerging in Latin America. We discussed the benefits of OPCs and the epidemiological implications. With so many people in Chile having access to smart phones, OPCs are constantly emerging and evolving. As such, Camilo argued that the true research question isn’t Why are you participating in an OPC? but instead, Why would you not? This led us to a conversation about the barriers to connecting and collaborating through OPCs. The barriers are endless and we landed on multiple themes but the one that kept emerging was the lack of research funding in Chile for exploring OPCs. Without an empirical foundation, there’s less support from medical professionals interacting face-to-face with the patient populations, a necessary ingredient in promoting OPC participation.

This barrier emphasizes the importance of transnational collaborations like the one we are currently building. By connecting researchers cross-culturally, gaps can be addressed and more culturally-inclusive research can be disseminated. The globe is connected virtually through the Internet- thus, research silos like the Anglo-centric OPC literature are counterproductive and quite simply, outdated. What a shame for supposedly innovative research. Luckily, the conversation today led to an exchange of emails and a promise that Camilo will assist us on our OPC projects. With his support, we can bring a stronger transnational lens to our research.

These moments have been the most meaningful for me. Since I began exploring E-health, the most inspiring aspect of the work has been to observe technology’s ability to bridge distance. Youth with HIV in Memphis can share stories with those in Kenya. Adults with celiac disease in Boston can trade recipes with those in Tokyo. And patients so ill that they are isolated in a hospital bed can meet new friends thousands of miles away. However the use, E-health can bring comfort where it might not be accessible. By being researchers who bridge distance within our own work, we are mirroring the power of OPCs and practicing what we preach.

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