Patient and Family Engagement in Australian and New Zealand Adult Critical Care Trials
Bibliographic record
Abstract
Abstract Rationale: Engaging critical care patients and their families in research design and conduct is a relatively new paradigm, yet is increasingly viewed as an ethical and scientific necessity. Within the Australian and New Zealand healthcare setting, the extent and quality of engagement in critical care trials is unknown. We sought to assess patient and family engagement in adult critical care clinical trials endorsed by the Australia and New Zealand Intensive Care Society's Clinical Trials Group (ANZICS CTG) over the past five years. Methods: We conducted a two-phase study: Phase 1 included an independent retrospective appraisal of patient and family engagement activities in trial protocols, progress reports, and published manuscripts. Phase 2 was a cross-sectional electronic survey of trial principal investigators and project managers. Both phases assessed the practice of patient and family engagement using a modified version of an existing tool (developed by the Canadian Critical Care Trials Group (CCCTG) Patient and Family Partnership Committee). The questionnaire also explored the priority of engagement, types of engagement activities, and barriers and facilitators of engagement. We used the Guidelines for Reporting the Impact of Patient and Public Involvement in Research 2 (GRIPP2) to summarize findings from Phase 1. Results: Phase 1: Of the 35 trials reviewed, although patient and family engagement was most frequently reported in the original trial protocol submitted to the ANZICS-CTG for endorsement (n=8, 23%), no patient and family engagement activities were reported in any of the final 10 trial publications. Phase 2: Questionnaire responses were available for 29/35 (82.9%) trials. In contrast to phase 1 results, 69% (n=20) of survey respondents reported undertaking some form of patient and family engagement during their trial. Engagement facilitators included using staff experienced in engagement, availability of staff to engage with patients and family, and priority and support given by hospital and departmental leadership. Barriers to engagement included a lack of resources and patient and family unavailability for engagement activities (Figure 1). Conclusions: We identified low rates of patient and family engagement in critical care clinical trial protocols and manuscripts endorsed via the ANZICS CTG over the past five years. Dedicated resources, supportive infrastructure, and assessment of the impact of patient and family engagement on research processes and outcomes is required to help advance engagement in clinical trials. Figure 1 – Summary of facilitators and barriers to patient and family engagement in critical care trials
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 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 | 0.329 | 0.471 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.004 | 0.006 |
| Science and technology studies | 0.003 | 0.005 |
| Scholarly communication | 0.005 | 0.005 |
| Open science | 0.002 | 0.008 |
| Research integrity | 0.002 | 0.002 |
| Insufficient payload (model declined to judge) | 0.003 | 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; the direct Gemma label and the distilled Codex classifier agree on what is shown here.
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".