Commercializing Personal Health Information: A Critical Qualitative Content Analysis of Documents Describing Proprietary Primary Care Databases in Canada
Bibliographic record
Abstract
BACKGROUND: Commercial data brokers have amassed large collections of primary care patient data in proprietary databases. Our study objective was to critically analyze how entities involved in the collection and use of these records construct the value of these proprietary databases. We also discuss the implications of the collection and use of these databases. METHODS: We conducted a critical qualitative content analysis using publicly available documents describing the creation and use of proprietary databases containing Canadian primary care patient data. We identified relevant commercial data brokers, as well as entities involved in collecting data or in using data from these databases. We sampled documents associated with these entities that described any aspect of the collection, processing, and use of the proprietary databases. We extracted data from each document using a structured data tool. We conducted an interpretive thematic content analysis by inductively coding documents and the extracted data. RESULTS: We analyzed 25 documents produced between 2013 and 2021. These documents were largely directed at the pharmaceutical industry, as well as shareholders, academics, and governments. The documents constructed the value of the proprietary databases by describing extensive, intimate, detailed patient-level data holdings. They provided examples of how the databases could be used by pharmaceutical companies for regulatory approval, marketing and understanding physician behaviour. The documents constructed the value of these data more broadly by claiming to improve health for patients, while also addressing risks to privacy. Some documents referred to the trade-offs between patient privacy and data utility, which suggests these considerations may be in tension. CONCLUSION: Documents in our analysis positioned the proprietary databases as socially legitimate and valuable, particularly to pharmaceutical companies. The databases, however, may pose risks to patient privacy and contribute to problematic drug promotion. Solutions include expanding public data repositories with appropriate governance and external regulatory oversight.
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 | 0.057 | 0.116 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.009 | 0.014 |
| Science and technology studies | 0.025 | 0.037 |
| Scholarly communication | 0.013 | 0.006 |
| Open science | 0.004 | 0.010 |
| Research integrity | 0.003 | 0.005 |
| Insufficient payload (model declined to judge) | 0.002 | 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".