8.12 Confidentiality during research

Most studies involve keeping details about a study confidential including any early results.

Community advocates also need to understand and follow similar confidentiality guidelines. This sometimes includes signing a confidentiality agreement.

Most studies will result in one group in a study doing better than another. As an advocate you may get to see these results before they are presented in public.

But early results can also change during the study.

As long as the study continues to be run ethically and as long as the study question hasn’t been answered, it is important that early results remain confidential.

Publicising early results could cause a study to never reach a final result.

For example, participants may stop or change treatment based on preliminary results, or on word-of-mouth, which might actually be wrong.

Early AZT studies are an example of where early short-term results led to stopping a study and then widely prescribing the drug. Only with results from a longer 2-year study did it become clear that there was no long-term benefit for most participants.

Only in exceptional circumstances and as a last resort should confidential results from an ongoing study be taken to the wider community. Any concerns though should always be discussed within the research group first.

Last updated: 1 January 2023.