Grant: Travel Awards - Institute Community Support

"Citizen science"-active participation by lay people in collecting, analyzing, and sharing data-has been pivotal to the history of HIV research and caused "community-based participatory research" to become mainstream in health research. Yet now, HIV researchers have turned toward big data, which necessitates a renegotiation of the role of citizen science. For research collaborations, big data science brings two important shifts: data are typically not collected for research purposes; and opportunity for collaboration comes after data collection. Big data science truncates the citizen scientists' ability to shape the conceptualization of data collection including who gets asked, what they get asked, and how. With participating in the conceptualization of data collection removed from their toolkit, what is the potential of citizen science to improve the ethics and veracity of big data HIV research? My current project entails a critical ethnographic examination of one of the first ever HIV citizen science big data research collaborations; it brings together people living with HIV (citizen scientists), big data scientists, social scientists, and clinicians to conduct administrative health data research. Our citizen scientists, who are older adults living with HIV with extensive experience in HIV citizen science, are interested in the recurrence of cardiovascular events among people living with HIV (PLWH) in BC. Using a strength-based approach, we hypothesize that PLWH are better connected to care than people who are not living with HIV in BC and therefore PLWH who have a cardiovascular event have greater survival rates. Our project is in the process of exploring whether this is indeed the case, which will significantly contribute to research on aging with HIV. As research continues to demonstrate the increased risk that people aging with HIV have for developing cardiovascular events, the risk for recurrent cardiovascular events has not been critically explored.