The Network for End of Life Studies (NELS) carries out an ongoing program of end of life care research. NELS is led by two Dalhousie University researchers: Dr Grace Johnston, School of Health Administration and Dr Fred Burge, Department of Family Medicine. NELS began in Halifax, Nova Scotia, Canada, in the mid 1990’s. The core research has been retrospective studies using linked health administrative databases for Nova Scotia. Visiting Scholars, Trainees and local networking have been key components.
Grants from the Canadian Institute of Health Research (CIHR) and other research funders, and in-kind support, have contributed to the development of NELS. Many peer-reviewed papers have been published and numerous poster and oral presentations have been made at national and international conferences. NELS findings have been disseminated through issues of NELS News and this website. NELS research findings have informed palliative and end of life care development and assessment locally, nationally and internationally.
Plans include the creation of an endowed palliative care research chair and obtaining more research grants. Our most recently funded projects are ABC-SC and an NSHRF-funded study to identify transitions in care settings.
A multi-year CIHR funded Interdisciplinary Capacity Enhancement (ICE) grant extended the work of NELS and facilitated the development of an interdisciplinary team of researchers. In collaboration with a community of institutional partners , we were able to conduct research in the various factors that comprise vulnerability at end of life and identify disparities and inequities in end of life care. The principal goals of NELS ICE were to build capacity and create new knowledge, inform decision-makers and assist in developing policies and interventions to overcome inequities in publicly funded end of life care for vulnerable individuals with terminal disease, and their families.
The Surveillance and Epidemiology Unit of Cancer Care Nova Scotia and Dr Paul McIntyre, Director of the Capital Health Integrated Palliative Care program, among others were key partners. The first ten years of record linkage research development is summarized as a poster, Ten Years of Research on Access to and Predictors of End of Life Cancer Care, Nova Scotia, Canada [PDF], and on pages 4-5 of NELS News 5 [PDF]. Our initial funder was Health Canada. Our initial peer review journal publication was in 1998 in the Canadian Medical Association Journal and was the only paper with empirical study data on this Special Issue on palliative care.