Treatment training manual

8.12 Confidentiality for advocates involved in research

For advocates to be actively involved in research usually involves understanding the importance of confidentiality in relation to study results, especially if you are seeing early trial results before they are made public. This can sometimes include formally signing a confidentiality agreement.

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

Often the early results though are not the same as the results seen at the end of 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 an important 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 may not in fact be reliable.

Research into AZT is an important historical example of where the first short-term results lead to stopping a trial 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 patients.

  • the researchers involved in the study, or
  • other community colleagues that agree to the same level of confidentiality.

Only in exceptional circumstances and as a last resort should confidential results from an ongoing study be taken to the wider community.

Last updated: 21 July 2009.