The RAND/PPMD Patient-Centeredness Method: a novel online approach to engaging patients and their representatives in guideline development
Why this work is in the frame
A frame that forgets how it found something cannot be audited. These are the routes that admitted this work.
Bibliographic record
Abstract
Although clinical practice guidelines (CPGs) provide recommendations for how best to treat a typical patient with a given condition, patients and their representatives are not always engaged in CPG development. Despite the agreement that patient participation may improve the quality and utility of CPGs, there is no systematic, scalable method for engaging patients and their representatives, as well as no consensus on what exactly patients and their representatives should be asked to do during CPG development. To address these gaps, an interdisciplinary team of researchers, patient representatives, and clinicians developed the RAND/PPMD Patient-Centeredness Method (RPM) - a novel online approach to engaging patients and their representatives in CPG development. The RPM is an iterative approach that allows patients and their representatives to provide input by (1) generating ideas; (2) rating draft recommendations on two criteria (importance and acceptability); (3) explaining and discussing their ratings with other participants using online, asynchronous, anonymous, moderated discussion boards, and (4) revising their responses if needed. The RPM was designed to be consistent with the RAND/UCLA Appropriateness Method used by clinicians and researchers to develop CPG, while helping patients and their representative rate outcome importance and recommendation acceptability - two key components of the GRADE Evidence to Decision (EtD) framework. With slight modifications, the RPM has the potential to explore consensus among key stakeholders on other dimensions of the EtD, including feasibility, equity, and resource use.
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.
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 | 0.004 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.000 | 0.000 |
| Science and technology studies | 0.000 | 0.000 |
| Scholarly communication | 0.000 | 0.001 |
| Open science | 0.000 | 0.000 |
| Research integrity | 0.000 | 0.000 |
| Insufficient payload (model declined to judge) | 0.000 | 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 it