Posted on March 13, 2015
Source: Yunru Lai
My name is Yunru Lai. I’m a Master’s student in the Epidemiology Department at Hopkins. I joined Generation Tomorrow because I mostly worked with data and hoped to get closer to the community. As a Generation Tomorrow student, I work with the AIDS Linked to the Intra-Venous Experience (ALIVE) Study.
Working with ALIVE gives me a different perspective on clinical spaces. In ALIVE, participants are not just data points. They’re real and sensitive. My supervisor, Lisa McCall, recently invited me to attend a Community Advisory Board meeting, which is made up of participants who have an interest in ALIVE activities and want to make a contribution to the study. The meeting started with the ritualistic turning of “the rain stick”. When its beads fell and produced the sound of rain, the crowd quieted and focused their attention on the speaker.
Lisa asked the participants to think about three questions: the challenges they had when they enrolled, the reasons they stayed and the significant impacts of the study. Besides receiving monetary incentives and helpful information, one of the most frequently mentioned points was that they feel they are respected in the clinic. Some participants said life outside of the study can be rough, and they had been judged or treated badly due to injection drug use, their sexual orientation, or even their economic status. For them, the clinic is a place where they get respect and attention. By building traditions and an atmosphere of love and tolerance, the participants feel they’re part of the study and they belong there. My field assignment has taught me what a smile and a pair of listening ears can do for people. Humanity and science are needed for a successful study.
