Grant: Health System Impact Fellowships - PostDoc Western Canada 2-year

Data science research is becoming more prominent in many fields, including HIV. Data science research makes use of electronic data already collected from multiple health sources, including administrative health data, i.e., data generated at each encounter with the health care system for administrative or billing purposes. Historically, active participation by people living with HIV (PLHIV) has been pivotal to HIV research; however, data science has largely excluded PLHIV participation. Community members have little research role in research centres like the BC Centre for Excellence (BCCfE) where administrative data (even their own) are housed. Community members need support to engage with technical, bureaucratic requests for data and analyze complex, quantitative data sets. This is a challenge to research organizations like the BCCfE that are eager to build community-data scientist collaborations. Furthermore, knowledge generation through data science research brings two important shifts from traditional community-engaged research: data are typically not collected for research purposes; and opportunity for research collaboration comes after data collection. Thus, administrative data limits community members' ability to shape the research. The lack of a roadmap makes it challenging for the BCCfE to know how to authentically engage community members or peer researchers in data science research. My project aims to: 1. Explore with peer researchers how to conduct community-led data science research while piloting community-led administrative health data research on recurrent cardiovascular events. 2. Mobilize this exploratory collaborative research to produce knowledge translation tools to: a) provide information on recurrent cardiovascular events for PLHIV and health care providers; and b) guide researchers, including data scientists and clinicians, in engaging community collaborators in data science research to promote ethical community-relevant and informed research.