Clinical trials and research: an HIV community guide (2023)
This online resource explains how research studies work and why they are important.
It covers how to understand the results and the roles of the advocate in research.
- Read this chapter online (Section 8 of the training manual for advocates, 2023).
- Download whole manual 399 Kb (PDF of 2009 edition, 2023 to follow)
The online edition of the rest of this resource was updated in January 2021.
Community involvement in HIV research is important. Advocates have always argued for active participant and community representation and involvement at all stages of our health care, including research.
This includes being involved on the type of research and the design of studies. It helps make sure that:
- Studies are run properly.
- All participants receive at least the current standard-of-care treatment.
- We are able to follow both enrolment and how the study is run.
- We are able to monitor and follow early results.
- As people living with HIV, advocates are aware of how upcoming treatment advances. might change future standard of care.
Information about how we produced this guide and the importance of using language that is direct and easy to understand.
This includes information on how to write non technical medical information. This might be useful as a guide for other organisations.