A resource on how clinical trials work, why they are important, understanding the results and the role of the advocate in research.
The online edition of this guide was updated in December 2015.
Community involvement in HIV research is important. Advocates have always argued for active patient 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 trials. It helps make sure that:
- Trials are run properly
- All patients receive at least the current standard-of-care treatment
- We are able to follow both enrolment and how the trial is run
- We are able to monitor and follow early results
- As patients and advocates we have a good idea on how latest treatment advances may affect the standard of care in the future.
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 that may be useful as a resource for other organisations.