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Privacy-by-design: Case studies in interactive record linkage using a hybrid human-computer system

2025· article· en· W4412805152 on OpenAlexaff
Hye‐Chung Kum, Eric D. Ragan, Mahin Ramezani, Theodoros V. Giannouchos, Qinbo Li, Adam G. D’Souza, Elmer V. Bernstam, Jeffrey R. Curtis, Alva O. Ferdinand, Cason Schmit

Bibliographic record

VenueInternational Journal of Medical Informatics · 2025
Typearticle
Languageen
FieldDecision Sciences
TopicData Quality and Management
Canadian institutionsAlberta Health Services
FundersNational Center for Advancing Translational SciencesNational Institute of Arthritis and Musculoskeletal and Skin DiseasesNational Institutes of HealthPatient-Centered Outcomes Research Institute
KeywordsComputer scienceRecord linkageLinkage (software)Human–computer interactionGeneMedicineGeneticsBiology

Abstract

fetched live from OpenAlex

OBJECTIVE: High-quality patient matching from several sources without a common identifier (ID) requires interactive record linkage (RL) using a hybrid human-computer system. MiNDFIRL (MInimum Necessary Disclosure For Interactive Record Linkage) is a hybrid prototype software system that facilitates maximizing linkage accuracy while minimizing information disclosure. We present and evaluate MiNDFIRL using two real-world case studies. MATERIALS AND METHODS: Two user studies were conducted linking 10,000 data pairs from EHR data and 18,240 unique patient IDs from patient generated data. After automated RL, manual review was conducted by three teams of four reviewers (12 total) using MiNDFIRL to resolve potential matches that required human judgment. Reviews for matches were conducted independently and disagreements were resolved through consensus. The teams then participated in a group discussion about MiNDFIRL using a semi-structured interview format. RESULTS AND DISCUSSION: The best algorithm, Random Forest, found 388 and 539 matches each for EHR and patient generated data algorithmically, but also output an additional 303 and 187 potential pairs that required manual review. 232 and 84 more matches were confirmed manually from these uncertain pairs respectively. Among the full uncertain pairs, only 30% of available identifying information was needed in MiNDFIRL to separate out 77% (232/303) and 45% (84/187) true linkages respectively. When available, first names and emails were the most frequently used fields in making RL decisions. CONCLUSION: On-demand access and masking techniques along with risk quantification through a hybrid human-computer system can significantly reduce disclosure while still minimizing false positives and false negatives in real-world RL.

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 distilled prediction

Teacher imitation

Not calibrated prevalence, not ground truth. Human validation pending. Learned from the 10,348 direct Codex labels and 10,348 direct Gemma labels. Candidate is the union of thresholded teacher heads; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels or direct frontier model labels.

metaresearch head score (Codex)0.009
metaresearch head score (Gemma)0.004
Version: codex-gemma-dda1882f352aValidation status: machine_predicted_unvalidated
Candidate categoriesnone
Consensus categoriesnone
DomainCandidate signal: none · Consensus signal: none
Study designCandidate signal: Simulation or modeling · Consensus signal: none
GenreCandidate signal: Empirical · Consensus signal: none
Teacher disagreement score0.796
Threshold uncertainty score0.449

Codex and Gemma teacher scores by category

CategoryCodexGemma
Metaresearch0.0090.004
Meta-epidemiology (narrow)0.0000.000
Meta-epidemiology (broad)0.0000.000
Bibliometrics0.0010.000
Science and technology studies0.0000.000
Scholarly communication0.0000.001
Open science0.0020.001
Research integrity0.0000.000
Insufficient payload (model declined to judge)0.0000.000

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.

Opus teacher head0.247
GPT teacher head0.516
Teacher spread0.269 · how far apart the two teachers sit on this one work
Validation statusscore_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from it

Classification

machine, unvalidated

Machine predicted; a candidate call from one teacher head, not a consensus.

The models applied no category: nothing in the taxonomy fit this work.
Study designSimulation or modeling
Domainnot available
GenreEmpirical

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".

Quick stats

Citations1
Published2025
Admission routes1
Has abstractyes

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