After surveying the needs of their community, the volunteers decided to research medical discrimination against people living with HIV/AIDS. Members of Phoenix report being turned away from hospitals charged for un-rendered services or required to purchase all medical instruments used in their care.  

Our training program lasted eight weeks and included workshops on selecting a research topic, conducting formative research, protecting personal information, conducting interviews, organizing information, analyzing data, planning advocacy, evaluating results and writing reports. These classes were based on Know It, Prove It, Change It! A Rights Curriculum for Grassroots Groups, a manual on rights documentation currently in development by Asia Catalyst, Thai AIDS Treatment Action Group, and Korekata AIDS Law Center.

The research team devoted three afternoons a week to the project and conducted all of the interviews themselves.

The following four principles guided the direction and focus of our training program:   

1.    Develop practical tools. The training course emphasized the use of hands-on, visual tools for analyzing information, planning advocacy and writing reports. Team members learned how to analyze the data they collect using cause-and-effect maps, event time lines, theme selection and rights squares. In another exercise, they used relationship maps to identify potential advocacy targets and allies, and then divided these individuals and organizations into supporters, un-mobilized parties and potential opponents. The goal of this exercise was to help team members to think about advocacy strategically, and to approach research as a tool to strengthen social change.

2.    Use real-world examples. The course used examples of both local and international research and advocacy projects in order to illustrate abstract concepts. We revisited the same examples throughout the course, in order to establish continuity and demonstrate the progress of research projects. The volunteers learned about child labor on tobacco farms in Malawi, a case I had personally worked on, in order to understand basic rights principles and to practice using those principles to analyze a problem.  We practiced research skills by considering cases in which schools discriminate against children affected by HIV/AIDS - a phenomenon with which our team members are familiar. Finally, volunteers learned about the U.S. student movement against sweatshop labor to understand advocacy strategies such as alliance-building, letter-writing and lobbying.

3.    Make informed consent a priority. Before beginning interviews, the volunteers learned about the importance of protecting the personal information and privacy of interviewees. Many of the volunteers have themselves experienced violations of privacy related to their status as sex workers and women living with HIV/AIDS, so they had no trouble understanding the importance of this principle. Volunteers studied the four basic components of informed consent - disclosure, voluntariness, comprehension and competence - and debated the merits of obtaining oral vs. written consent. They analyzed the potential risks to others of participating in the research project, and learned how to identify and respond to interviewees suffering from post-traumatic stress disorder (PTSD).  

4.    See research as a means, not an end. Most importantly, this program introduced the concept of research as a tool rather than as an end in itself. Early in the course, one of the team members asked: "Can this kind of research really improve our situation? Will people with power actually listen to us?" Like all researchers, they quickly realized that research and advocacy are long-term endeavors with pay-offs that often seem distant and unattainable. I was most impressed by the resolve and dedication the volunteers invested in this project, even knowing that this research represents just a first step toward lessening medical discrimination against people living with HIV/AIDS.  

The research team is currently analyzing the information they collected. They have begun to write a report and plan advocacy aimed at ending medical discrimination in their community.

Mike Frick is an MPH student at Harvard University, and was a summer graduate intern with Asia Catalyst. Some of the tools from the Know It, Prove It, Change It curriculum can be downloaded at http://asiacatalyst.org/blog/2010/07/human-rights-mission-kit.html.