Brain tumor patients’ rights and the power of patient advocacy: The current international landscape
Bibliographic record
Abstract
Across the globe, significant inequities in brain tumor treatment, care, and support perpetuate. Identifying and addressing these unmet needs in the context of patients' rights is crucial to reducing inequalities and improving outcomes for people living with brain tumors. Brain tumor patient advocacy addresses and influences gaps in healthcare provision, ensuring optimal treatment, care, and support for patients, their caregivers, and families. Therefore, the purpose of this review is to highlight the variety of challenges faced by brain tumor patients, caregivers, and advocates in various parts of the world and set a benchmark for improvements. Twenty-eight leading brain tumor patient/caregiver advocates from 18 countries in Asia Pacific, Sub-Saharan Africa, North America, Eastern Europe, and Western Europe collaborated to explore unmet and met needs in their countries. Virtual meetings were held with the 5 geographic groupings. Through a process of discussion based on a combination of patient advocates' informed expert opinion, published references, a survey (Asia Pacific) and the informal completion of a matrix of challenges by some of the advocacy organizations involved, agreement within the groupings was also reached regarding what rights within The Brain Tumor Patients' Charter of Rights they felt were being met and where there are still gaps. Acknowledging that some rights in The Brain Tumor Patients' Charter of Rights are aspirational, there still remain many areas of the world where even basic patient rights are not yet attainable. Patient advocacy organizations stand ready to help change this to achieve the best possible health and quality of life outcomes for adults and children living with brain tumors.
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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 | 0.034 | 0.044 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.002 | 0.003 |
| Science and technology studies | 0.006 | 0.020 |
| Scholarly communication | 0.015 | 0.018 |
| Open science | 0.002 | 0.013 |
| Research integrity | 0.006 | 0.009 |
| Insufficient payload (model declined to judge) | 0.007 | 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 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".