Navigating Privacy in Health Data Sharing: A Patient-Centric Approach to Health Information Exchange
Bibliographic record
Abstract
Personal Health Information (PHI) sharing through Health Information Exchange (HIE) enhances patient safety in Canada, yet not all provinces and territories voluntarily disclose PHI on safety incidents to federal and pan-Canadian surveillance systems. A frequently cited barrier by healthcare organizations for HIE between different interoperable health databases is patients' and families' concerns for their privacy. This explorative qualitative study examined patients' and families' attitudes toward PHI sharing, including its secondary use in patient safety events. Rather than expressing reluctance, participants described support for HIE when privacy safeguards, such as defined sharing purposes and anonymous formats, were in place. These findings present a significant opportunity for health leaders and data custodians to use the research findings to create a patient-centric framework for the HIE of PHI.
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 | 0.102 | 0.058 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.002 | 0.002 |
| Science and technology studies | 0.022 | 0.051 |
| Scholarly communication | 0.022 | 0.021 |
| Open science | 0.004 | 0.023 |
| Research integrity | 0.006 | 0.010 |
| Insufficient payload (model declined to judge) | 0.003 | 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 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".