Patient-led collaborative awarded $50,000 by Patient-Centered Outcomes Research Institute

Liz Salmi, an advocate and person living with brain cancer, has been approved for a $50,000 award by Patient-Centered Outcomes Research Institute (PCORI) to support a stakeholder engagement project on brain cancer and palliative care.

Salmi and her team of stakeholders will use the funds provided through PCORI’s Pipeline to Proposal Awards program to build a partnership of individuals and groups who share a desire to advance patient-centered outcomes research focused on optimizing palliative care for patients with brain cancer and their families.

Salmi and the Brain Cancer Quality of Life Collaborative, October 2017

Salmi and the Brain Cancer Quality of Life Collaborative, October 2017

“Care options for patients with brain cancer often include palliative care, an inter-professional approach to improving function and quality of life for those with a serious illness,” said Salmi. “Unfortunately, many patients and families dealing with a brain cancer diagnosis are often not told about palliative care interventions early in their diagnosis and suffer from avoidable side effects and disorganized transitions in care.”

Pipeline to Proposal Awards enable individuals and groups that are not typically involved in clinical research to develop the means to develop community-led funding proposals focused on patient-centered comparative effectiveness research (CER). Established by the non-profit PCORI, the program funds help individuals or groups build community partnerships, develop research capacity, and hone a comparative effectiveness research question that could become the basis of a research funding proposal to submit to PCORI or other health research funders.

“Families want to spend time building memories, not navigating the healthcare system,” said Bethany Kwan, PhD, MSPH, project co-lead, and Assistant Professor, Department of Family Medicine at the University of Colorado School of Medicine. Dr. Kwan lost her mother to glioblastoma, the most malignant form of brain cancer, in 2016.

Additional project stakeholders include patients, care partners, neuro-oncology and palliative care clinicians, representatives from the University of California, Davis, University of Washington, and National Brain Tumor Society. View the growing stakeholder team.

More information about this project can be found on the PCORI Pipeline to Proposals Awards web page.

“The Pipeline to Proposal Awards program is a manifestation of PCORI’s commitment to the meaningful involvement of patients, caregivers, clinicians, and other stakeholders in all our research endeavors,” said Jean Slutsky, PA, MSPH, PCORI’s Chief Engagement and Dissemination Officer. “It provides support to those who may not otherwise have an opportunity to contribute to the field of comparative effectiveness research. We’re pleased to follow the awardees’ progress as they develop partnerships and begin to form research questions.”

The Brain Cancer Quality of Life Collaborative is exploring better quality of life standards for people living with glioblastoma and other high-grade brain tumors.

PCORI is an independent, non-profit 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 healthcare decisions. PCORI is committed to seeking input from a broad range of stakeholders to guide its work.