Innovative interdisciplinary capacity building: Identification, explication, and applications of research for vulnerable populations at end-of-life

Research that examines the experiences of vulnerable populations at end of life is quite limited. In this regard, we understand "vulnerable populations" to be those that are at a higher risk of adverse health outcomes because of their unique circumstances. While all persons are vulnerable to some degree at end of life, some groups face additional challenges because of their social status, ethnicity, religious background, race, gender, age, or geographical location. The Network for End of Life Studies (NELS) will engage an interdisciplinary Team of researchers and community and institutional partners to conduct research into various factors that comprise vulnerability at end of life and identify disparities and inequities in quality end of life care. Our primary goal is to build capacity and conduct research to inform decision makers and assist in developing policies and interventions to overcome inadequacies in publicly funded end of life care for persons with terminal disease. Specifically, the Network will 1) develop a system that will enhance identification and surveillance of vulnerable populations at end of life; 2) design and conduct pilot studies to facilitate the development of full research proposals that examine and address vulnerability and inequity in provison of quality end of life care; 3) translate knowledge that more fully informs decision makers, health professionals and researchers; and 4) create an interdisciplinary Team of researchers, trainees, health professionals, community partners and advocates for vulnerable populations. Thereby, we will develop a conceptual framework to further the definition of vulnerable populations. Our goal is to conduct research and develop policies and interventions to address disparities and inequities in the provision of end of life care.