{"id":"W4413956167","doi":"10.1111/hae.70120","title":"People With Haemophilia as Data Coordinators: An Analysis of the Ethics and Feasibility of Self‐Management With Personal Health Records","year":2025,"lang":"en","type":"article","venue":"Haemophilia","topic":"Mobile Health and mHealth Applications","field":"Health Professions","cited_by":2,"is_retracted":false,"has_abstract":true,"ca_institutions":"Canadian Hemophilia Society","funders":"Radboud Universitair Medisch Centrum; Universitair Medisch Centrum Groningen; Leids Universitair Medisch Centrum; Radboud Universiteit; Swedish Orphan Biovitrum; CSL Behring; Amsterdam University Medical Centers; Nederlandse Vereniging voor Trombose en Hemostase; Nederlandse Organisatie voor Wetenschappelijk Onderzoek; Universiteit Leiden","keywords":"Health care; Usability; Medical record; Health management system; Medicine; Internet privacy; Data management; Personally identifiable information; Knowledge management; Self-management; Computer science; Computer security; Database; Alternative medicine","routes":{"ca_aff":true,"ca_fund":false,"ca_venue":false,"about_ca":false,"invisible_to_affiliation_only":false},"retraction":null,"screen":null,"direct_labels":[],"prediction":{"model_version":"metacan-v3-hybrid-931329e0061c","candidate_categories":[],"consensus_categories":[],"category_scores_codex":[0.04840382,0.0002053174,0.0005234378,0.002163968,0.005697376,0.006378204,0.001178985,0.001593053,0.00210819],"category_scores_gemma":[0.1255806,0.0005786524,0.0006208086,0.001957435,0.005579015,0.004912692,0.006047674,0.00199275,0.0002050693],"about_ca_system_candidate":false,"about_ca_system_consensus":false,"about_ca_system_score_codex":0.005021669,"about_ca_system_score_gemma":0.007351231,"about_ca_topic_candidate":false,"about_ca_topic_consensus":false,"about_ca_topic_score_codex":0.005560569,"about_ca_topic_score_gemma":0.00570575,"domain_scores_codex":[0.9359807,0.05247434,0.002595594,0.00154214,0.00515291,0.002254302],"domain_scores_gemma":[0.8392072,0.1219939,0.01633105,0.004327158,0.01373433,0.004406339],"domain_codex":null,"domain_gemma":null,"domain_candidate":null,"domain_consensus":null,"study_design_codex":"qualitative","study_design_gemma":"observational","study_design_scores_codex":[0.0001092848,0.0001550714,0.09816988,0.0001948061,0.00002131963,0.0005230786,0.8796986,0.00003860161,0.000165486,0.002651426,0.0004995282,0.01777302],"study_design_scores_gemma":[0.00002389506,0.0001907704,0.0535129,0.0003149374,0.00003403341,0.0005879423,0.9352173,0.0004311285,0.0002455765,0.001153553,0.008251192,0.00003681567],"study_design_candidate":"observational","study_design_consensus":null,"genre_codex":"empirical","genre_gemma":"empirical","genre_scores_codex":[0.9929448,0.0002257242,0.0008097905,0.001662535,0.0000137006,0.00011837,0.00002621793,0.000006642671,0.004192185],"genre_scores_gemma":[0.9984047,0.0001523348,0.0006602258,0.0002028741,0.000005640251,0.0001093945,0.00001701101,0.000005113373,0.0004427612],"genre_candidate":"empirical","genre_consensus":"empirical","teacher_disagreement_score":0.04840382,"threshold_uncertainty_score":0.2559869,"prediction_status":"machine_predicted_unvalidated"},"machine_scores":{"provisional":true,"baseline":true,"maturity_gate_passed":false,"score_opus":0.08381054738968005,"score_gpt":0.4511765887743268,"score_spread":0.3673660413846468,"validation_status":"score_only:v0-immature-baseline","note":"Baseline scores from an immature model (maturity gate not passed). Scores rank; they never assert a category."}}