From July 13 to 15, 1999, a satellite symposium entitled, “Communities Creating Knowledge: building capacity for community-based research” was held in Ottawa in conjunction with AIDS Impact, the 4th International Conference on the Biopsychosocial Aspects of HIV Infection.
This gathering drew together nearly 40 individuals from Australia, New Zealand, Norway, South Africa, Sweden, the United Kingdom, the United States and across Canada, with an interest in community-based HIV research. The symposium built on discussions from a number of international meetings on the efforts of communities and community groups in research.
Influencing the research agenda has been an activity of community groups since the beginning of the HIV pandemic. Persons living with HIV and AIDS transformed the field, moving from victim and subject of research to empowered survivors and partners in health research. In Canada, the health promotion policy framework enabled vulnerable communities to get involved in creating supportive environments and strengthening community action as a way of increasing control over and improving our health.
With all the boundary crossing that has occurred in this pandemic, many barriers still exist for vulnerable communities and persons living with HIV and AIDS to fully participate in research. Although community activists have been able to influence areas of the research agenda, basic, clinical, epidemiological and social science research continue to be mainly academically driven and institutionally controlled. Ethical review of research involving humans continues to be mainly controlled by universities and institutions.
Communities Creating Knowledge was organized to gather together community members, persons living with HIV, community researchers, research advocates, policy makers, program managers and their allies in an environment supportive of community research efforts. We met to present community research projects and discuss the possibilities of creating an international network and a charter document for community-based research.
This symposium was held in conjunction with an international AIDS conference to facilitate involvement from individuals from various global regions. Although we were successful in attracting community researchers from many Commonwealth and European countries and from across Canada, we were unable to attain travel funds to assist persons from resource poor countries to participate in the actual meeting. We have ensured that community researchers from every global region have been involved in reviewing follow-up material.
This report reviews the presentations, discussion, recommendations and documents from the satellite meeting and outlines the strategic directions for an international network for communitybased research.