Project Summary

The Hutchinson Institute for Cancer Outcomes Research (HICOR) is a program led by Scott Ramsey, MD, PhD, and Gary Lyman, MD, MPH, that designs and implements national clinical trials, collaborative community projects, and innovative research studies to reduce the human and economic burden of cancer. Located at Fred Hutchinson Cancer Research Center in Seattle, HICOR focuses on cancer care delivery research (CCDR), a multidisciplinary science that examines how patient and clinician behavior, and organizational structures, influence the availability, quality, cost, and outcomes of cancer care.

Recognizing that stakeholder engagement in research is critical to ensuring greater utility and relevance of research results, HICOR engages a broad network of stakeholders in Washington State, including 20 patient partners (patients, survivors, caregivers, advocates) and 75 stakeholder partners (providers, payers, guideline experts, researchers/academics) in research studies and longitudinal community projects. The inclusion of patient partners in the entire research continuum is critical to patient-centered CCDR, yet HICOR’s current engagement program lacks the infrastructure to fully represent or integrate patient perspectives into its research portfolio. The project team’s proposed solution is to create a unifying patient engagement program, with comprehensive infrastructure and communication pathways, that fully integrates patient partners into CCDR and ensures the full benefit of their expertise, experience, and perspectives.

The team’s objective is to enhance HICOR’s patient engagement program through a two-year, stakeholder-driven process. The project team will engage its extensive stakeholder network in the following project activities:

  • A systematic needs assessment (including patient partner focus groups and a stakeholder survey) to identify gaps in current patient engagement practices
  • Development of a patient engagement plan that includes prioritization of program enhancements and additional components based on needs assessment results
  • Initial implementation of the patient engagement plan that targets components prioritized by patient partners

A patient advisory committee (PAC), comprised of six patient partners who are highly active in HICOR research projects, will guide all project activities. The PAC will convene twice a year via webinar to discuss project progress and review draft documents related to key deliverables. Stakeholder feedback, especially from patient partners, will shape the development and finalization of a patient engagement plan that outlines the processes and resources needed to support long-term patient engagement.

At the end of Year 2, the PAC and project team will initiate implementation of components of the patient engagement plan, focusing on the highest-prioritized enhancements. The project’s outcome will be the creation of a structured, sustainable patient engagement program for HICOR’s research portfolio. Engagement expert Patricia Deverka, MD, MS, of the American Institutes for Research (AIR) will serve as a project co-investigator and oversee the patient focus groups, assist in sharing the results of the needs assessment with HICOR’s stakeholders, and help guide the prioritization and implementation of program enhancements.

Engagement Resources

Project Information

Scott Ramsey, MD, PhD
Fred Hutchinson Cancer Research Center
$249,882

Key Dates

24 months
2018

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Project Status
State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Last updated: November 10, 2022