8.13 Summary of different advocacy roles
Advocates can be involved in many different roles.
These include being involved in:
- Trial design before the study is finalised.
- Wording of patient information sheets and informed consent.
- Publicising good research to help study enrolment.
- Highlighting poor or inappropriate research.
- Taking an educational role to explain benefits and risks of a study to community groups.
- Being an independent advisor for whether a trial is appropriate for an individual patient.
- Joining a trial steering committee and following enrolment, trial practice and early results.
- Joining a Data and Safety Monitoring Board (DSMB).
- Reporting and critically commenting on results after they are publicly presented at medical meetings or published.
- Suggesting additional analysis of study results.
- Ensuring results are presented and published publically and in time while they are still relevant.
- Ensuring study participants are informed of the results of the research that they have been involved in.
Last updated: 21 July 2009.