Die Beteiligung von Patient*innen an der Entwicklung von Leitlinien in der Klinischen Medizin. Ein selektiver Ländervergleich in narrativer Übersicht
Bibliographic record
Abstract
AIM: A clinical practice guideline aims to optimize patient care by recommending diagnostic or treatment pathways, based on the best available research and practical experience. Therefore, the needs and preferences of patients and their families should be incorporated. The aim of this study was to examine regulations and standards of patient involvement in guideline development, using a selective comparison of countries. METHOD: Information was extracted from publicly available websites and guidelines development manuals for the United Kingdom (UK), the United States, Canada, and Australia. They were compared and discussed in a narrative review. RESULTS: In the UK, at least two people from among patients or the public must be involved in all guideline development committees and during all stages of the development process. The US National Academy of Medicine recommends active participation in guideline development groups by patients with disease-specific experience and patient representatives from the public. The Canadian Task Force on Preventive Health Care wants patient preferences to be involved, especially in the development of final guideline recommendations and usability testing. In Australia, guidelines receive the approval or seal of approval of the National Health and Medical Research Council if at least one patient representative can be shown to have been a member of the committee and to have been involved in the entire process of guideline development. CONCLUSION: The selective country comparison shows that patient involvement in guideline development and the binding nature of the rules vary considerably, and that there are no uniform standards for involvement. Many issues of involvement are unresolved, and special sensitivity will be needed to bring together the life and experiences of patients/laypersons and the medical system on an equal footing.
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 | 0.060 | 0.162 |
| Meta-epidemiology (narrow) | 0.000 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.002 | 0.001 |
| Science and technology studies | 0.003 | 0.005 |
| Scholarly communication | 0.007 | 0.009 |
| Open science | 0.001 | 0.008 |
| Research integrity | 0.003 | 0.005 |
| Insufficient payload (model declined to judge) | 0.007 | 0.002 |
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".