Patient and Family Advisory Council (PFAC)
"Real Voices, Real Journeys, Awakening Hope Together"
Mission:
To amplify the voices of patients, families, and caregivers affected by disorders of consciousness through meaningful engagement, collaborative research, and education - wtih the goal of advancing innovation in the delivery of neurocritical care that reflects the lived experiences and needs of those most impacted.
Vision:
A global community where patients, families, and caregivers are empowered as partners in shaping compassionate, informed, and innovative approaches to treatment and care of persons with disorders of consciousness.
Scope of Work:
1. Inclusive Representation
- Build a diverse PFAC with participation of individuals across a spectrum of important demographics such as age groups, socioeconomic backgrounds, and ethnicities.
- Ensure equitable involvement of clinicians and persons with lived experience in all module activities.
2. Educational Resource Development
- Co-create accessible, multilingual educational tools (e.g., webinars, infographics).
- Collaborate across CCC modules to align content with family and caregiver needs.
- Foster bidirectional information flow between families/caregivers and healthcare professionals (HCP).
3. Stakeholder Engagement
- Promote the HCP-patient/family/caregiver partnership in care planning and policy.
- Collaborate with advocacy groups and global organizations (e.g., American Congress of Rehabilitation Medicine, International Brain Injury Association).
- Involve HCPs, advocates, and policymakers in resource dissemination.
- Advocate for systemic changes that improve ICU survivorship and long-term support.
- Provide feedback to patients/families on the results and impact of their engagement.
4. Research & Evaluation
- Support research on caregiver involvement and education strategies.
- Explore models of caregiver engagement and research/report best practices.
- Contribute to manuscripts and grant applications focused on patient and caregiver engagement.
- Provide a secure and responsive conduit for engaging patients and caregivers in educational, research, and clinical initiatives - ensuring their voices inform and shape innovation.
5. Community Building
- Foster collaboration across CCC modules and external partners.
- Cultivate a sense of belonging and shared purpose among patients, caregivers, clinicians, and researchers interested in contributing to the CCC.
If you're interested in getting involved or would like the Curing Coma PFAC to provide input on a project, please click on the button below to fill out the intake survey.
Get Involved with PFAC