Accessing Research Participant Advocacy Services
CTSC Research Participant Advocates:
At MSKCC or HSS, please contact the Patient Representative first:
- MSKCC: (212) 639-8254
- HSS: Lydia Dalley (212) 774-2403
Research Participant Advocacy Program
The Research Participant Advocacy Program was created in 2001 in an effort to restore public trust in the research enterprise following a series of public disclosures of research abuses at prominent medical centers. Our program builds on the principles of ethics and advocacy to ensure that human research subjects are protected and given a voice to represent their needs and rights. The research participant advocates report to the Dean of the Medical College to maintain independence from individual institutions' regulatory and compliance administrations, as well as from persons responsible for day-to-day direction of Center activities, the CTSC PI and Program Directors. Research participant advocates:
- Represent research subject interests by acting as a liaison between research participants, investigators, IRB, and staff at each participating institution.
- Review protocols for the CTSC Translational Research Advisory Committee (TRAC) to address ethical and safety issues including consents, enrollment, and data and safety monitoring plans.
- Review Adverse Event reports.
- Ensure that subjects and potential subjects are provided with information about their rights as a research participant and be available to hear and address their questions and problems/complaints about their rights and safety.
- Provide a mechanism for consultation regarding research participant-related questions or problems.
- Collaborate with Patient Services departments at NewYork-Presbyterian Hospital, MSKCC and HSS to engage existing advocacy services.
- Educate researchers on research ethics and advocacy.