The State of Patient-Centered Outcomes Research in Chronic Kidney Disease: Perspectives from Patients, Care Partners, and Researchers
Bibliographic record
Abstract
Patient-centered outcomes research (PCOR) requires that patients and care partners be active partners throughout the entire research process. Although PCOR methodologies in health research have increased, PCOR on chronic kidney disease (CKD) remains relatively low. This project aimed to better understand the state of PCOR on CKD from the perspectives of patients, care partners, and researchers. Two National Kidney Foundation (NKF) surveys were completed by 847 CKD patients and care partners and 647 CKD researchers. Results indicate that a small minority (7%) of patient and care partner respondents were involved with kidney disease research, and less than a third (27%) of responding researchers indicated that they had involved patients and care partners in their research projects within the last five years. Despite relatively low numbers of PCOR projects on CKD, patients and care partner respondents are eager to participate in research and, likewise, CKD researchers are interested in doing PCOR. Implications include increasing PCOR on CKD and utilizing nephrology social workers to facilitate connections among CKD patients, care partners, and researchers.
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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 | 0.282 | 0.222 |
| Meta-epidemiology (narrow) | 0.000 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.003 | 0.003 |
| Science and technology studies | 0.011 | 0.015 |
| Scholarly communication | 0.020 | 0.014 |
| Open science | 0.002 | 0.014 |
| Research integrity | 0.004 | 0.008 |
| 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".