The Quebec Observatory on End-of-Life Care for People with Dementia: Implementation and Preliminary Findings
Bibliographic record
Abstract
Most Canadians with dementia die in long-term care (LTC) facilities. No data are routinely collected in Canada on the quality of end-of-life care provided to this vulnerable population, leading to significant knowledge gaps. The Quebec Observatory on End-of-Life Care for People with Dementia was created to address these gaps. The Observatory is a research infrastructure designed to support the collection of data needed to better understand, and subsequently enhance, care quality for residents dying with dementia. This article reports on the main steps involved in setting up the Observatory, as well as a pilot study that involved 172 residents with dementia who died between 2016 and 2018 in one of 13 participating facilities. It describes the data gathered, methodological changes that were made along the way, feedback from participating facilities, and future developments of the Observatory.
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.020 | 0.026 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.001 | 0.003 |
| Science and technology studies | 0.009 | 0.002 |
| Scholarly communication | 0.003 | 0.001 |
| Open science | 0.002 | 0.004 |
| Research integrity | 0.001 | 0.002 |
| Insufficient payload (model declined to judge) | 0.002 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".