Background: Promoting patient-centered, translational research requires integration of a patiet advocate into laboratory operations. Patient advocates would like to know what is going on in their local cancer research community in terms of fundamental research and be engaged in university research activities that may help them make educated treatment decisions for their family members or themselves. They want public money to be spent on patient-centered, meaningful research that they participate in from the beginning.
Proposed Solution to the Problem: The CRAG program will train and work with patient advocates to promote innovative, evidence-based, patient-centered, translational research and to foster and expand opportunities for advocates in the Illinois research community and beyond. To the project team’s knowledge, this is the first attempt in academia to create a training program specific to cancer research advocates.
- Train advocates using available external programs
- Establish a cancer research advocate training program at UIUC
- Incorporate advocates into active research programs at UIUC
Activities: For the initial phase of the patient advocate training, the project team would like to send advocates to events that include specific sessions for patient advocates. In addition, the team will meet monthly with a core group of advocates to talk about fundamental and translational research going on at UIUC. Project leaders will incorporate advocates into research teams. Several members of the community are already part of such teams and work with students, researchers, and clinicians.
Outcomes: The project team expects the CRAG training program to result in meaningful, high-impact, patient-centered, innovative, evidence-based, and accessible cancer research that is informed by patient advocates. In the local cancer community, the team expects CRAG-trained advocates to increase UIUC-local community engagement by participating in cancer-related events and interviews, representing UIUC in cancer functions, spreading the word about the research and highlighting bench-to-bedside research. In the UIUC research community, the project team expects the advocates to improve patient-centered outcomes of cancer research by providing the patient perspective, especially considering quality-of-life issues early in study design, helping investigators craft abstracts that are more accessible to lay public, and reviewing papers and grant proposals. Finally, nationwide, CRAG-trained advocates will increase patient-centered outcomes of research by taking active roles in funding agencies or attending advisory panels for leading establishments such as the American Society of Clinical Oncology (ASCO).
Patient Engagement Plan: The project team will meet with patient advocates monthly. These meetings enable the team to inform advocates about the research going on at UIUC, talk about cancer-related conferences the team has attended, and identify opportunities in the community related to patient advocate engagement in research. In addition, the project team will offer a course for advocates on fundamental cancer biology. The researchers will have small symposia once a year to disseminate what CRAG advocates do locally and nationwide.
Project Collaborators: The project team has already established connections with other academic and advocacy organizations and patient advocates. The researchers are also supported by the local cancer community in Illinois.
Project Resource: Cancer Center Visit Report