Conversations between clinicians and patients about goals of care become increasingly important when patients experience serious illness. The complexity of serious illness conversations multiplies dramatically when the patient is experiencing substance use disorders, mental health issues, homelessness or other challenges related to socio-economic factors (referred to as structural vulnerabilities). Currently, little is known about the preferences of structurally vulnerable patients while engaging in serious illness conversations. This is a major practice gap and an important area of palliative care research. Through one-on-one interviews, we will hear directly from patients about their experiences having these conversations. We will identify common themes and preferences for engaging in serious illness conversations. Ultimately, we hope to develop a best practice guide for clinicians and improve health care for patients experiencing structural vulnerabilities.
Recruitment to platform at one of the hubs
Consent and enrolment in platform
Collection of key data, minimizing participant burden for individual trials
Screening automatically for all trials taking place on the platform, maximizing options for patients and caregivers
Trials – patients and caregivers participate in trials they are eligible for
Ongoing check-ins – patients and caregivers are followed until they choose to stop participating or until patient death
Bereavement – we follow caregivers for up to three years and offer them bereavement interventions
By linking practice and research, the platform will improve care for patients and families affected by advanced cancer.
Practice
Clinicians, patients, and caregivers identify areas for improvement in care.
PCPCRC
Supports foundational research that identifies promising interventions.
Research Platform
Comprised of Phase 3 RCTs, Research Hubs, Data Strategy.
Evaluation of hub model and data strategy to optimize research.
Training and mentorship underlie and uphold all activities in the cycle.