Origins of NELS

The NELS program of end of life research has evolved since the mid 1990’s under the leadership of Dalhousie University researchers Dr Fred Burge, Department of Family Medicine, and Dr Grace Johnston, School of Health Administration, in collaboration with staff of 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. 

Over more than ten years (1995-2006), approximately ten Canadian Institute of Health Research (CIHR) and other research grants contributed to the development of what is now termed the Network for End of Life Studies. Some grants have involved inter-provincial collaborations. Many peer-reviewed published papers and national and international conference presentations have resulted from these research endeavors. The core research has been retrospective studies using linked health administrative databases for Nova Scotia. CIHR and other grants have enabled NELS development.

Where We Are Now

A five-year CIHR funded Interdisciplinary Capacity Enhancement (ICE) grant extends the work of NELS and facilitates the development of an interdisciplinary team of researchers and community and institutional partners to conduct research into the various factors that comprise vulnerability at end of life and identify disparities and inequities in end of life care. The principal goals of our NELS-ICE are 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 and their families with terminal disease.

It is anticipated that many additional sources of funding will be explored. The creation of an endowed chair in palliative care and end of life studies is being considered. We plan to link with projects and teams newly funded by CIHR.

Ten Years of Research on Access to and Predictors of End of Life Cancer Care, Nova Scotia, Canada (PDF file)