Consenting to share data from electronic health records to research deposits: Constraints, obstacles, and proxy
Bibliographic record
Abstract
In the age of data, one of the major challenges of biomedical research is to have access to the patients' information. As health data of the populations are being globally stored into electronic health records, a lingering demand from the research community is to have these data transferred to electronic research records that would be accessible for research purposes. The central element for sharing data from electronic health records to research deposits is the consent. Yet, can a valid consent be obtained if the magnitude and outcomes of the research to be performed with massive data cannot be foreseen? We will analyze the trans-sectional, trans-temporal, and trans-spatial characteristics of the data that could be shared between electronic health records and electronic research records. We will then explore the constraints and obstacles to ensure the validity of the consent, and decipher the possibility of a gradation of the consent.
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 | 0.206 | 0.402 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.002 | 0.001 |
| Bibliometrics | 0.002 | 0.004 |
| Science and technology studies | 0.003 | 0.012 |
| Scholarly communication | 0.007 | 0.011 |
| Open science | 0.003 | 0.006 |
| Research integrity | 0.005 | 0.007 |
| Insufficient payload (model declined to judge) | 0.004 | 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; the direct Gemma label and the distilled Codex classifier agree on what is shown here.
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".