Great article Kyle. Best of luck during your field work.

This is such an important point and it is something I wish more researchers were actively considering in their work. As a researcher who facilitates and implements a model of community based HIV / AIDS research, I have come to realize that active participation in all phases of research by those who are its focus is vital to our academic credability, as well as our clinical partnership.

One of the tools we currently use is something called OCAP principles. Originally developed for use in First Nations Research, there has been a recent push in qualatative HIV research, at least in the institution I am involved in, to adopt a similar structure. OCAP stands for:

• Ownership: Ownership refers to the relationship of PHA’s (people with HIV) to their cultural knowledge, data, and information. This principle states that a community or group owns information collectively in the same way that an individual owns his or her personal information.
• Control: The principle of control affirms that PHA’s, their communities and representative bodies are within their rights in seeking control over all aspects of research and information management processes that impact them. PHA control of research can include all stages of a particular research project-from start to finish. The principle extends to the control of resources and review processes, the planning process, management of the information etc.
• Access: It is imperative that PHA’s have access to information and data about themselves and their communities, regardless of where it is currently held. The principle also refers to the right of PHA communities and organizations to manage and make decisions regarding access to their collective information. This may be achieved, in practice, through standardized, formal protocols.
• Possession: While ownership identifies the relationship between a people and their information in principle, possession or stewardship is more concrete. It refers to the physical control of data. Possession is a mechanism by which ownership can be asserted and protected.