Patient engagement in the SPOR Evidence Alliance: Reflection and learnings
Bibliographic record
Abstract
The Evidence Alliance (EA) is a Canada-wide multi-stakeholder organization providing national-level support in knowledge synthesis, clinical practice guidelines development, and knowledge translation. With a mandate to deliver the best available evidence to inform health policy and improve patient care, the EA involves patients and their caregivers in its governance, research priority setting and conduct, and capacity building. To reflect on the experiences of patient involvement in its first three years, the organization conducted a self-study with 17 actively involved patient partners. They answered the Patient Engagement in Research Scale 22-item short form (PEIRS-22) and open-ended questions. Of the 15 respondents, 12 were women with a mean age of 62.6 years (SD 10.1). The mean PEIRS-22 score was 82.1 (SD 15.9), indicating perceived meaningful engagement. Analysis of the free-text answers identified three themes: ( i) communication: successes, changes, and improvements; ( ii) a respectful and welcoming environment; and ( iii) opportunities to learn and contribute. Patient partners noted the EA made genuine efforts to welcome them and value their contributions. They also identified a need for the organization to increase patient partner diversity. This self-study was perceived as rewarding as it provided a foundation for further growth in patient involvement within the organization.
Fetched live from OpenAlex and de-inverted. Abstracts are not stored in this database: the inverted indexes are 8.6 GB of the frame’s 9.3 GB of text, and the host has 13 GB free.
How this classification was reachedexpand
Full frame distilled prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. Learned from the 10,348 direct Codex labels and 10,348 direct Gemma labels. Candidate is the union of thresholded teacher heads; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels or direct frontier model labels.
Codex and Gemma teacher scores by category
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.002 | 0.000 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.000 | 0.000 |
| Science and technology studies | 0.001 | 0.000 |
| Scholarly communication | 0.000 | 0.000 |
| Open science | 0.000 | 0.000 |
| Research integrity | 0.000 | 0.001 |
| Insufficient payload (model declined to judge) | 0.001 | 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 teacher head, 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".