Research Priorities

Optimizing palliative care may require improved coordination with the patient’s entire care team over the full course of illness—rather than the more typical episodic, symptom-based approaches that are reactive rather than proactive.

The following research priorities were identified by BCQoLC stakeholders in 2017-2018.

Establish a network of participating sites for a brain cancer palliative care pragmatic comparative effectiveness trial.

We will determine existing and needed capacity and resources for conducting pragmatic, patient-centered comparative effectiveness trials of palliative care models for brain cancer. We will identify resources and develop capacity in potential trial sites in five domains: 1) care delivery (care team member availability and training), 2) outcomes assessments, 3) data infrastructure, 4) recruitment, and 5) payment.

Establish materials and messaging for pragmatic trial conduct.

We will co-design and test perceived acceptability and feasibility of protocol materials and messaging to promote effective recruitment of patients, care partners and clinicians, and ensure trial rigor.

The subjective viewpoint a patient brings to bear on the understanding of illness and disease provides a robust, rich, and informative source of information.
— Adam Hayden, MA, glioblastoma patient
L to R: Michael D. Fratkin, MD, Liz Salmi, Adam Hayden, MA

L to R: Michael D. Fratkin, MD, Liz Salmi, Adam Hayden, MA