8.13 Different advocacy roles in research

Community advocates can be involved in many aspects of a study.

• Helping in the study design.
• Helping with participant information and informed consent.
• Publicising good research to help the study enrol.
• Highlighting if there are concerns or inappropriate research.
• Having an educational role to explain benefits and risks of a study to community groups.
• Talking to people who might want to join the study about the advantages and disadvantages.
• 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: 1 January 2023.