Patient engagement in a Canadian consensus forum for heart donation after circulatory determination of death
Bibliographic record
Abstract
PURPOSE: Heart donation and transplantation following circulatory determination of death has yet to be performed in Canada. A consensus forum was held to provide expert guidance to inform policy with a comprehensive patient partner strategy. This paper describes the process used to create fulsome patient partner engagement resulting in mutually beneficial policy development in this complex area. METHODS: A wide-ranging process for involving patient partners in this area included pre-meeting education, in-meeting expert support, full participation and permission to step back if desired, and post-meeting debriefing. Following the meeting, a questionnaire was used to guide a debrief discussion with patient partners and steering committee members who co-authored this paper. RESULTS: Five key themes arose that echoed the sentiments and contributions made by patient partners, including: 1) a strong desire to improve the system, 2) gratitude and honour, 3) expert support and process, 4) simplification of complex concepts, and 5) mutual benefit expressed by patient partners and healthcare professionals. CONCLUSION: Despite the complexity of the content and the emotionally sensitive nature of discussions around deceased organ donation, a well-planned strategy to involve patient partners is important, impactful, and central to the process. This suggests a broad interprofessional audience can engage with properly prepared and supported patient partners to strengthen and focus dialogue and outputs in the development of health policy in the donation and transplant sector.
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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 | 0.093 | 0.108 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.002 | 0.001 |
| Science and technology studies | 0.033 | 0.008 |
| Scholarly communication | 0.007 | 0.003 |
| Open science | 0.004 | 0.018 |
| Research integrity | 0.006 | 0.010 |
| Insufficient payload (model declined to judge) | 0.010 | 0.001 |
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".