Fred Hutchinson Cancer Research Center’s health economics group, the Hutchinson Institute for Cancer Outcomes Research, has received a $249,882 two-year award from PCORI, the Patient-Centered Outcomes Research Institute.
The award will be used to enhance patient engagement in HICOR’s community-based cancer care delivery research; the award’s principal investigator is HICOR director and health economist Dr. Scott Ramsey.
“Patient participation in the research process is essential to HICOR’s goals of aligning care with best practices, improving outcomes, and reducing economic burden for patients and their families,” Ramsey said. “We currently engage with a broad network of regional stakeholders, but our patient partners comprise a small subgroup within this network. That makes it difficult for the patient perspective to be adequately represented. This award is a unique and exciting opportunity to strengthen the role of patients in our program and ensure the full benefit of their expertise and perspective.”
Ramsey also emphasized the importance of patients’ and caregivers’ firsthand experience with the intricacies of the cancer care delivery system.
“Patients and those who care for them offer invaluable insight into the strengths, gaps and inefficiencies of cancer care delivery,” he said. “But engaging with these partners can be challenging. Research around cancer care delivery can be complex and some patients may believe they don’t have the training or skills needed to engage. It can also be time consuming due to meetings, conference calls and ongoing communication.”
HICOR in 2014 launched its grassroots community engagement program, the Value in Cancer Care Initiative, by inviting a variety of stakeholders — payers, providers, policymakers, patients and more — to participate in identifying shared priorities to improve cancer care; assessing community cancer care delivery systems via shared performance metrics; and brainstorming, designing and then implementing interventions aimed at improving care.
At present, the VCC Initiative’s regional network is comprised of 32 patient partners and 75 stakeholder partners representing the majority of oncology practices, as well as public and private health insurers in Washington state. The new award will help HICOR bump its patient engagement.
Ramsey said their two-year plan will start with a systematic needs assessment that will include patient partner focus groups and a survey to identify gaps in their current patient engagement practices. Once the gaps and additional needs are identified, the HICOR team will develop a patient engagement plan and then put that plan into action.
All activities will be guided by a six-member Patient Advisory Committee familiar with HICOR’s research objectives and processes.
“We hope that at the end of two years, we’ll have a structured, sustainable patient engagement program for our research portfolio,” Ramsey said.
PCORI is an independent, nonprofit organization authorized by Congress in 2010 to fund comparative effectiveness research that will provide patients, their caregivers and clinicians with the evidence needed to make better-informed health and health care decisions. PCORI is committed to seeking input from a broad range of stakeholders to guide its work.
Diane Mapes is a staff writer at Fred Hutchinson Cancer Research Center. She has written extensively about health issues for NBC News, TODAY, CNN, MSN, Seattle Magazine and other publications. A breast cancer survivor, she blogs at doublewhammied.com and tweets @double_whammied. Email her at email@example.com.