What does patient engagement mean for Canadian National Transplant Research Program Researchers?
Bibliographic record
Abstract
In recent years, the importance of involving patients in research has been increasingly recognized because it increases the relevance and quality of research, facilitates recruitment, enhances public trust and allows for more effective dissemination of results. The Canadian National Transplant Research Program (CNTRP) is an interdisciplinary research team looking at a variety of issues related to organ and tissue donation and transplantation. The aim of this study was to gather the perspectives of CNTRP researchers on engaging patients in research. We conducted interviews with 10 researchers who attended a national workshop on priority-setting in organ donation and transplant research. The researchers viewed patient engagement in research as necessary and important. They also considered that patients could be engaged at every step of the research process. Participants in this study identified scientific language, time, money, power imbalance, patient selection and risk of tokenism as potential barriers to patient engagement in research. Training, adequate resources and support from the institution were identified as facilitators of patient engagement. This study showed a positive attitude among researchers in the field of organ donation and transplantation. Further studies are needed to study the implementation and impact of patient engagement in research within the CNTRP. Background Involving patients in research has been acknowledged as a way to enhance the quality, relevance and transparency of medical research. No previous studies have looked at researchers’ perspectives on patient engagement (PE) in organ donation and transplant research in Canada. Objective The aim of this study was to gather the perspectives of Canadian National Transplant Research Program (CNTRP) researchers on PE in research. Methods We conducted semi-structured interviews with ten researchers who attended a national workshop on priority-setting in organ donation and transplant research. The interviews were digitally recorded and transcribed verbatim, and the transcripts were subjected to qualitative thematic and content analyses. Results The researchers viewed PE in research as necessary and important. PE was a method to incorporate the voice of the patient. They also considered that patients could be engaged at every step of the research process. The following were identified as the main barriers to PE in research: (i) scientific jargon; (ii) resources (time and money); (iii) tokenism; (iv) power imbalance; and (v) patient selection. Facilitating factors included (i) training for patients and researchers, (ii) adequate resources and (iii) institutional support. Conclusion This study revealed a favourable attitude and willingness among CNTRP researchers to engage and partner with patients in research. Further studies are needed to assess the implementation of PE strategy within the CNTRP and its impact.
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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 | 0.055 | 0.001 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.002 | 0.001 |
| Science and technology studies | 0.012 | 0.001 |
| Scholarly communication | 0.000 | 0.001 |
| Open science | 0.001 | 0.001 |
| Research integrity | 0.000 | 0.003 |
| Insufficient payload (model declined to judge) | 0.002 | 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 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".