Background: The ABOUT Patient-Powered Research Network (PPRN) is a collaboration between Facing Our Risk of Cancer Empowered (FORCE), a nonprofit advocacy organization for people affected by hereditary cancer, and researchers at the University of South Florida (USF). Many hereditary cancer researchers are unaware of the scope of engagement tools available through the network and request help late in the study process.
Proposed Solution to the Problem: Project COGENT will create tailored tools and a toolkit to help researchers engage patients at all phases of research. The project team is proposing to customize and optimize current successful patient-engagement resources and approaches developed and utilized by ABOUT, to create a model to promote ongoing, reciprocal engagement of consumers and researchers throughout all facets of clinical research.
- Learn how hereditary cancer researchers engage patients and assess their patient engagement needs
- Customize engagement tools to meet the specific needs of investigators
- Share tools with researchers and patients in an easy-to-use format
Activities: The project will:
- Identify and survey researchers to assess current practices, preferences, and needs for patient engagement
- Use these results to enhance existing tools and create tailored resources including:
- Revise the GAP360 portal to allow researchers to submit studies for feedback and input by the public
- Simplify the FRAT training program to allow participation by a wider pool of patients
- Create easy templates for investigators to submit their studies for inclusion in the Research Study Search Tool and to submit their published studies for dissemination through the XRAY program
- Package resources in an easily accessible format for researchers
Outcomes: By providing investigators with better tools to engage patients and creating additional pathways for patients to provide meaningful contributions to research, the project team hopes to increase the engagement in hereditary cancer research.
Patient and Stakeholder Engagement: The project’s patient stakeholders include cancer survivors, individuals who are at increased risk of hereditary cancer but have not been diagnosed (“previvor”), individuals who carry an inherited mutation, and representatives from patient organizations that provide support or services to the individuals above. They will participate in quarterly steering committee meetings along with advocacy organization and research representatives and will be asked to join workgroups of the same stakeholders that will meet every other month.
Project Collaborators: COGENT will be led by ABOUT principal investigators and staff from FORCE and USF, under the direction of the COGENT Steering Committee, which includes representatives of patients, investigators, advocacy organizations, PCORnet Partner Networks, and the Cancer Collaborative Research Group.