Health Disparities Research and Community Engagement Core

University Of Colorado Denver, Aurora CO

Investigators

Abstract

ASCENT: ENGAGEMENT CORE (EC) PROJECT SUMMARY/ABSTRACT Populations with serious illness, including cancer and Alzheimer’s Disease (AD/ADRD), experience substantial suffering and face persistent challenges in access to and quality, use, and outcomes of palliative care. These challenges occur across multiple domains, including symptom management, clinician communication, receipt of goal-concordant care and attention to caregiver needs. In addition, while palliative care has been shown to be beneficial in improving outcomes for persons with serious illness (PWSI) and their families, these services are frequently underutilized or inaccessible. Further, too often investigators fail to engage PWSI in the design and conduct of research which is critical to ensure that studies address what matters most to PWSI and their families. In response to these identified needs, the Advancing the Science of Palliative Care Research Across the Lifespan (ASCENT) Consortium will intentionally focus on promoting quality of and access to palliative care in all of its programs and initiatives through engagement of PWSI and their family caregivers. The Engagement Core (EC) will play a pivotal role in facilitating integration across all ASCENT activities, serving as the primary hub of community-engaged research expertise. Drawing upon the expertise of a multidisciplinary team of experienced investigators and in collaboration with all ASCENT investigators, the EC will achieve the following specific aims: 1) Integrate community-engaged research expertise across all ASCENT cores and activities through an embedded model where EC members serve as liaisons to other ASCENT cores. 2) Foster the training and development of scientists conducting community-engaged research to improve access to palliative care and prepare all PC scientists, regardless of area of focus, to apply a community-engaged approach throughout the research process through consultation, mentorship, and community-building. 3) Create and disseminate new knowledge and resources to support the conduct of rigorous community-engaged research to address challenges in palliative care access and delivery across the lifespan through the conduct of systematic reviews of research on populations with largest burdens of unmet PC needs, participation in Consortium-wide developmental projects, and collaboration with other cores. 4) Establish and actively engage a lived experience advisory panel (LEAP) comprising patients, caregivers, clinicians, clergy, and representatives of community and national organizations to ensure that the voices and perspectives of those directly impacted by serious illness are integrated into all aspects of the Consortium’s research and programs. ASCENT will address the urgent need to reduce gaps in serious illness care through transformational approaches that center the perspectives of PWSI and their families into training, research, and program design. The EC will catalyze this transformation by driving rigorous community-engaged research that facilitates access to high quality palliative care for all PWSI.