Eng/aging and HIV: Knowledge exchange between administrative data study and older adults living with HIV in British Columbia

Since the 1980s, HIV/AIDS community groups have engaged with science to ensure that research is done with them instead of simply about them yet it is rare for communities to engage with studies using administrative health data — that is, data electronically generated at every encounter with the health care system for administrative or billing purposes. This is a collaborative project amongst researchers and people living with HIV that explores how to embody the “nothing about us without us” principle in administrative data studies to ensure ongoing authentic engagement across all HIV research. Engaging with an administrative data study called COAST at the B.C. Centre for Excellence in HIV/AIDS, we will co-develop, pilot, and evaluate a process to research the experience of aging with HIV. In B.C., over half of people living with HIV who are on treatment are over 50 years of age. People with HIV are living longer lives. Through a regular series of meetings with our research council, we aim to develop a way to leverage administrative data (COAST) to better understand the complex reality of aging with HIV that is relevant to people living with HIV, which may help improve health services and health outcomes for people living with HIV.