Project Summary

Background: Underserved communities in Chicago carry some of the greatest cancer burdens. Per the National Cancer Institute, community engagement/outreach and ensuring that patients/stakeholders have an active voice in all phases of research is a key factor in ensuring not only diversity and inclusiveness in clinical trials but also in expanding the reach of cutting-edge cancer finders. Yet, there is a lack of best practices in training and patient stakeholder engagement to ensure the patient’s/survivor’s voice is an active part of cancer center strategic research development.

Proposed Solution: The UI Cancer Center (UICC) of the University of Illinois at Chicago (UIC) has developed the UICC Patient Brigade (UIPB). The UIPB is a group of patient advocates/survivors who convened to inform the UICC leadership/researchers of cancer-related patient-centered outcomes research (PCOR) priorities. The project team plans to develop and disseminate a training toolkit to provide patients/stakeholders with the capacity to engage in equitable dialogue with PCOR and cancer disparities researchers. We also plan to develop a leadership guide for best practices in engaging patient stakeholders at cancer centers to advance patients'/stakeholders' capacity to engage in strategic PCOR research.

Objectives:

  • Increase capacity of the UIPB by providing in-person trainings  to support bidirectional engagement with center leadership and policy makers using elements from the PCORI Engagement Rubric and Dissemination and Implementation Framework and Toolkit
  • Develop a best practices guide for cancer center leaders/researchers
  • Foster ongoing relationships/collaborations between UIPB, communities, and researchers/leadership

Activities: The project team will adapt/deliver training materials that are responsive to training needs expressed by UIPB to increase their capacities in bidirectional engagement with leadership; train and maintain a cohort of UIPB members who reflect populations often excluded in PCOR research; collaborate with UIPB to develop a best practices guide for cancer centers to involve community members in strategic planning of research initiatives; and evaluate activities and outcomes. The UIPB will participate in trainings; priority-setting meetings; and engage in evaluation. Members will assist in developing two community town hall forums to disseminate findings.

Outcomes/Outputs:

  • Convention of a group of highly engaged patients/advocates who are empowered to guide strategic planning/research initiatives that will improve PCOR health outcomes
  • Completion of a training series that will address UIPB needs to increase PCOR engagement capacity
  • Best practices guide, which will guide and inform institutional cancer centers on best methods for engaging patient stakeholders and improve institutional strategic planning and community-based/PCOR research

Patient and Stakeholder Engagement Plan: The UIPC members represent a variety of PCOR partners, survivors, and community stakeholders with broad social networks.
Project Collaborators: The UIPB was the vision of a UICC patient. Key community collaborators are the WOT Foundation and Joanne Glen, MBA, an instrumental voice and advocate for cancer survivors, and the Blue Hat Foundation and Candace Henley, the Chief Surviving Officer and a nationally recognized cancer survivor and advocate.

Award Team: Karriem S. Watson, DHSc, MS, MPH, Project Lead; Vida A. Henderson, PhD, PharmD, MPH, Co-Project Lead; Susan Hong, MD, MPH, Co-Project Lead; Joanne Glenn, MBA, Community Partner; Candace Henley, Community Partner; and Liliana San Miguel, Project Coordinator.

More About This Engagement Award Project

Project Information

Karriem S. Watson, DHS, MPH, MS
Vida Henderson, MPH, PhD, PharmD, and Susan Hong, MD, MPH
University of Illinois at Chicago
$249,885

Key Dates

27 months
2018

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Last updated: November 23, 2021