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FZ.<  Ethical MandatesAAs advocates become more involved in the research process, does their commitment to and hope for advancing cancer research undermine their ability to safeguard the rights and advocate for the needs of individuals and groups who participate in clinical trials? &ZAAWho Do Advocates Represent? AWho do advocates represent in their work and is it possible to advocate for research as well as for individuals and/or groups who participate in this research? ) CollaboratorsARVernal Branch Nora Carbine Deborah Collyar Peggy Devine Bettye Green Margaret KirkjSA AA A  A AA @Musa Mayer Ginny Mason Margo Michaels Maryann Napoli Nancy Roach\A A AA A  AA Changing RolesAIn general, today s advocates are respected, valued and have a level of legitimacy No longer do we blindly assist or support a researcher--we want to know what they plan to do, why they are doing it and will it be of real benefit to our population C Changing Roles A&We bring the patient experience and voice into research dialogue, help streamline process to get better answers to patients more quickly Advocates want to keep the face of patients and their families in front of the research community--humanizes research arena to be accountable and forthcoming4'CC  Changing RolesAImportant to distinguish the trained advocates, evidence-based medicine from access-oriented or funding-oriented More and more important that advocates are highly trained, know the scientific and ethical issues as well as the  patient perspective 8qCCC  Changing RolesAAs number of advocates increases, need to have clear standards for comment on and evaluation of protocols, training--otherwise we offer our personal opinion, interesting but not worth a lot Mere presence of advocates does not change the research process or necessarily provide a higher ethical standard. Participation of advocates varies widely and does not alter  the system :zZCCC Changing RolesAResearch institutions are confused as to what advocates can do, how to utilize them and may only see advocates as avenues for recruiting for clinical trials and getting funds *ZCC Ethical MandatesAPatients safety, careful and clear informed consent, honesty in reporting, solid trial design and monitoring Not to be influenced by funding as advocacy grows and industry funding increases for groups(nC\C Ethical MandatesALook at implications of what I say and do for all cancer patients, early access is not always in the best interest of the patient It s unethical to push for immediate approval of a drug that is not fully tested--once available, no incentive to do further clinical trials:ZCCCEthical MandatesAHClinical trials must be clearly represented as a research study, on the other hand, need to educate that better treatments come through clinical trials-- value research, as researchers need to  value individuals Ethical mandate=informed consent=informed decision making, at least in theory :%ZCMCCEthical MandatesA:Requesting an explanation about why the trial is important Formulating research questions and designing studies--we re here to make sure trials are accruable8;CbCCWho Do Advocates Represent?AIs it possible to advocate for research as well as for individuals and/or groups who participate in this research? Yes, but be very clear about what hat we re wearing. Researchers call us on conflicts if they see us being conflicted Yes, as long as two guiding principles are used-- We represent patients first, then research We do not sell clinical trials tZZKZZtCvC2C+ A AAACWho Do Advocates Represent?A,Advocates must  advocate for more and better research trials, greater collaboration between stakeholders and not specific studies or organizations How advocates are selected, how they are trained and how they are used must be completely transparent for their role to be ethical:ZCCCEthical Roles A How advocates are selected, how they are trained, who funds their work and how they are used must be completely transparent for their role to be ethical and for advocates to play a role in sustaining ethical mandates for researchHZZCCC/  ! 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