Structuring initiative of the Axis 1 – Project for a minimum dataset
One of the goals of Axis 1 is to create a toolkit that could easily be implemented in various clinical and research settings with the eventual goal of creating a province-wide minimum dataset to identify psychosocial and symptom management needs and quality of life needs of patient receiving palliative care across the province. The creation of a minimum dataset adapted for the Quebec palliative care context has important interwoven clinical and research implications. Clinically, standardised measurements will lead to improved detection of symptoms that alter patients’ quality of life as well as improved symptoms management across various settings. It will also provide in vivo indicators of the quality of care across different clinical settings providing palliative care at the micro or service level. For the purposes of research, it will eventually lead to the development of a province-wide databank which will facilitate epidemiological analyses of psychosocial needs and symptom management across the province. This will also allow us to determine province-wide indicators of the quality of care, which could drive the development of new research questions, collaborations, interventions and studies testing such interventions, and indicate where funding might be needed to address gaps in care.
Structuring initiative of the Axis 3 – Review of the different observatory models in the health field in Quebec and Canada
The Axis 3 is working, collaboratively with the INESSS, the ministerial authorities, and the Comission d’accès à l’information, on the implementation of a national end-of-life observatory. This observatory would group all relevant data on the care trajectories of patients at end-of-life in ordre to synthesise knowledge or to answer questions. It would also make it possible to map and share innovative initiatives from the perspectives of care and services, as well as of policies and programs. It is essential to begin with the documentation of existing observatories in Quebec and Canada in order to identify a model more suitable to the needs of the researchers, clinicians and decision-makers in the palliative care field. A rapid review will be conducted to generate a synthesis of knowledges that will support the decisions made in implementing a national observatory in end-of-life.