How to Involve Patients in GRAPPA Research as Partners
Bibliographic record
Abstract
Patient research partners (PRPs) have been actively participating in the Group for Research and Assessment of Psoriasis and Psoriatic Arthritis (GRAPPA) annual meetings, working groups, and research activities since 2013. As they have evolved, the PRPs operate as a cohesive group supported by their GRAPPA-approved handbook and policy documents. The number of involved PRPs has increased, allowing more opportunity for the incorporation of the patient voice and experience in GRAPPA activities. In the GRAPPA proceedings, PRPs regularly report on their involvement in the meetings and research projects. During a 30-minute plenary session at the GRAPPA 2023 annual meeting, attendees were informed about the evolving roles of PRPs in GRAPPA and beyond and were asked to provide feedback on their experience and opinions regarding PRP involvement in psoriatic disease research. Here we report the key messages of the session, including polling results, examples of PRP involvement, and ongoing challenges.
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 | 0.064 | 0.126 |
| Meta-epidemiology (narrow) | 0.001 | 0.002 |
| Meta-epidemiology (broad) | 0.001 | 0.002 |
| Bibliometrics | 0.002 | 0.001 |
| Science and technology studies | 0.017 | 0.007 |
| Scholarly communication | 0.018 | 0.023 |
| Open science | 0.003 | 0.026 |
| Research integrity | 0.015 | 0.020 |
| Insufficient payload (model declined to judge) | 0.028 | 0.017 |
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".