CCTG uses an integrated patient engagement model that includes the patient voice in all aspects of cancer clinical trial development. Patients Representatives are not only involved in answering the scientific questions that clinical trials ask, they play an essential role on CCTG’s national disease site committee as participating members who contribute to the development and delivery of the cancer research questions. Patient Representatives ensure that patient centred outcomes included in CCTG cancer clinical trials.
Patient-oriented research refers to research that engages patients as partners, focuses on patient-identified priorities and improves patient outcomes. This research, conducted by multidisciplinary teams in partnership with stakeholders, aims to apply the knowledge generated to improve health care systems and practices. – msfhr.org - Michael Smith Foundation for Health Research
Patient engagement in clinical trail research is two-fold:
- Trial Participant – the human participant in the trial
- Patient Representative – developing and delivering the research question, ensuring: patient feasibility, outcomes that matter to patients
There are several touch points where Patient Representatives provide input as members of Scientific, Oversight and Support Committees. They are actively involved at key junctures of the CCTG Clinical Trial life cycle: Development, Review/Approval, Protocol and Consent Development, Accrual and Data Collection and at the time of Permanent Closure.