This paper is in the following e-collection/theme issue:

Ethics, Privacy, and Legal Issues (479) Digital Health Reviews (1289) Secondary Use of Clinical Data for Research and Surveillance (367)

Published on in Vol 21, No 5 (2019): May

Preprints (earlier versions) of this paper are available at https://preprints.jmir.org/preprint/13484, first published .
Use and Understanding of Anonymization and De-Identification in the Biomedical Literature: Scoping Review

Use and Understanding of Anonymization and De-Identification in the Biomedical Literature: Scoping Review

Use and Understanding of Anonymization and De-Identification in the Biomedical Literature: Scoping Review

Authors of this article:

Raphaël Chevrier1, 2 Author Orcid Image ;   Vasiliki Foufi1, 2 Author Orcid Image ;   Christophe Gaudet-Blavignac1, 2 Author Orcid Image ;   Arnaud Robert1, 2 Author Orcid Image ;   Christian Lovis1, 2 Author Orcid Image
Article Authors Cited by (62) Tweetations (97) Metrics

Journals

  1. Solomonides A. Review of Clinical Research Informatics. Yearbook of Medical Informatics 2020;29(01):193 View
  2. Larson D, Magnus D, Lungren M, Shah N, Langlotz C. Ethics of Using and Sharing Clinical Imaging Data for Artificial Intelligence: A Proposed Framework. Radiology 2020;295(3):675 View
  3. Petersen C, Subbian V. Special Section on Ethics in Health Informatics. Yearbook of Medical Informatics 2020;29(01):077 View
  4. Cicchini C, Mazzeo M, Livoli D, Simone A, Valeriano V, Pugliese F. The right to be protected, the right to be forgotten: the European General Data Protection Regulation 679/2016 in Emergency Medicine. Italian Journal of Emergency Medicine 2020;9(1) View
  5. Lovis C. Unlocking the Power of Artificial Intelligence and Big Data in Medicine. Journal of Medical Internet Research 2019;21(11):e16607 View
  6. Parker W, Jaremko J, Cicero M, Azar M, El-Emam K, Gray B, Hurrell C, Lavoie-Cardinal F, Desjardins B, Lum A, Sheremeta L, Lee E, Reinhold C, Tang A, Bromwich R. Canadian Association of Radiologists White Paper on De-Identification of Medical Imaging: Part 1, General Principles. Canadian Association of Radiologists Journal 2021;72(1):13 View
  7. Zegers C, Witteveen A, Schulte M, Henrich J, Vermeij A, Klever B, Dekker A. Mind Your Data: Privacy and Legal Matters in eHealth. JMIR Formative Research 2021;5(3):e17456 View
  8. Pung J, Rienhoff O. Key components and IT assistance of participant management in clinical research: a scoping review. JAMIA Open 2020;3(3):449 View
  9. Jeong Y, Yoo S, Kim Y, Shim W. De-Identification of Facial Features in Magnetic Resonance Images: Software Development Using Deep Learning Technology. Journal of Medical Internet Research 2020;22(12):e22739 View
  10. Cole C, Sengupta S, Rossetti (née Collins) S, Vawdrey D, Halaas M, Maddox T, Gordon G, Dave T, Payne P, Williams A, Estrin D. Ten principles for data sharing and commercialization. Journal of the American Medical Informatics Association 2021;28(3):646 View
  11. Syed S, Syed M, Syeda H, Garza M, Bennett W, Bona J, Begum S, Baghal A, Zozus M, Prior F. API Driven On-Demand Participant ID Pseudonymization in Heterogeneous Multi-Study Research. Healthcare Informatics Research 2021;27(1):39 View
  12. Steinkamp J, Pomeranz T, Adleberg J, Kahn C, Cook T. Evaluation of Automated Public De-Identification Tools on a Corpus of Radiology Reports. Radiology: Artificial Intelligence 2020;2(6):e190137 View
  13. Reichold M, Dietzel N, Chmelirsch C, Kolominsky-Rabas P, Graessel E, Prokosch H. Designing and Implementing an IT Architecture for a Digital Multicenter Dementia Registry: digiDEM Bayern. Applied Clinical Informatics 2021;12(03):551 View
  14. Hertz D, Arwood M, Stocco G, Singh S, Karnes J, Ramsey L. Planning and Conducting a Pharmacogenetics Association Study. Clinical Pharmacology & Therapeutics 2021;110(3):688 View
  15. Pesapane F, Rotili A, Agazzi G, Botta F, Raimondi S, Penco S, Dominelli V, Cremonesi M, Jereczek-Fossa B, Carrafiello G, Cassano E. Recent Radiomics Advancements in Breast Cancer: Lessons and Pitfalls for the Next Future. Current Oncology 2021;28(4):2351 View
  16. Rutherford M, Mun S, Levine B, Bennett W, Smith K, Farmer P, Jarosz Q, Wagner U, Freyman J, Blake G, Tarbox L, Farahani K, Prior F. A DICOM dataset for evaluation of medical image de-identification. Scientific Data 2021;8(1) View
  17. Zuo Z, Watson M, Budgen D, Hall R, Kennelly C, Al Moubayed N. Data Anonymization for Pervasive Health Care: Systematic Literature Mapping Study. JMIR Medical Informatics 2021;9(10):e29871 View
  18. Samlali K, Thornbury M, Venter A. Community-led risk analysis of direct-to-consumer whole-genome sequencing. Biochemistry and Cell Biology 2022;100(6):499 View
  19. Auwerx C, Sadler M, Reymond A, Kutalik Z. From pharmacogenetics to pharmaco-omics: Milestones and future directions. Human Genetics and Genomics Advances 2022;3(2):100100 View
  20. Islam S, Mishra V, Siddiqui M, Moses J, Adibi S, Nguyen L, Wickramasinghe N. Smartphone Apps for Diabetes Medication Adherence: Systematic Review. JMIR Diabetes 2022;7(2):e33264 View
  21. Sung M, Cha D, Park Y. Local Differential Privacy in the Medical Domain to Protect Sensitive Information: Algorithm Development and Real-World Validation. JMIR Medical Informatics 2021;9(11):e26914 View
  22. Wahid K, Glerean E, Sahlsten J, Jaskari J, Kaski K, Naser M, He R, Mohamed A, Fuller C. Artificial Intelligence for Radiation Oncology Applications Using Public Datasets. Seminars in Radiation Oncology 2022;32(4):400 View
  23. Swales L. The Protection of Personal Information Act and data de-identification. South African Journal of Science 2021;117(7/8) View
  24. Arefolov A, Adam L, Brown S, Budovskaya Y, Chen C, Das D, Farhy C, Ferguson R, Huang H, Kanigel K, Lu C, Polesskaya O, Staton T, Tajhya R, Whitley M, Wong J, Zeng X, McCreary M. Implementation of the FAIR Data Principles for Exploratory Biomarker Data from Clinical Trials. Data Intelligence 2021;3(4):631 View
  25. Scheibner J, Ienca M, Vayena E. Health data privacy through homomorphic encryption and distributed ledger computing: an ethical-legal qualitative expert assessment study. BMC Medical Ethics 2022;23(1) View
  26. Sampurno F, Kowalski C, Connor S, Nguyen A, Acuña À, Ng C, Foster C, Feick G, Boronat O, Dieng S, Brglevska S, Ferrante S, Leung S, Villanti P, Moore C, Graham I, Millar J, Litwin M, Papa N. Knowledge and insights from a maturing international clinical quality registry. Journal of the American Medical Informatics Association 2022;29(5):964 View
  27. Mawji A, Longstaff H, Trawin J, Dunsmuir D, Komugisha C, Novakowski S, Wiens M, Akech S, Tagoola A, Kissoon N, Ansermino J, Shah J. A proposed de-identification framework for a cohort of children presenting at a health facility in Uganda. PLOS Digital Health 2022;1(8):e0000027 View
  28. Dammen L, Finseth T, McCurdy B, Barnett N, Conrady R, Leach A, Deick A, Van Steenis A, Gardner R, Smith B, Kay A, Shirtcliff E. Evoking stress reactivity in virtual reality: A systematic review and meta-analysis. Neuroscience & Biobehavioral Reviews 2022;138:104709 View
  29. Shin S, Kim H. Data Pseudonymization in a Range That Does Not Affect Data Quality: Correlation with the Degree of Participation of Clinicians. Journal of Korean Medical Science 2021;36(44) View
  30. Roguljić M, Šimunović D, Poklepović Peričić T, Viđak M, Utrobičić A, Marušić M, Marušić A. Publishing Identifiable Patient Photographs in Scientific Journals: Scoping Review of Policies and Practices. Journal of Medical Internet Research 2022;24(8):e37594 View
  31. Lathe R. Restricted access data in the neurosciences: Are the restrictions always justified?. Frontiers in Neuroscience 2023;16 View
  32. Rodriguez A, Tuck C, Dozier M, Lewis S, Eldridge S, Jackson T, Murray A, Weir C. Current recommendations/practices for anonymising data from clinical trials in order to make it available for sharing: A scoping review. Clinical Trials 2022;19(4):452 View
  33. Gaudio A, Smailagic A, Faloutsos C, Mohan S, Johnson E, Liu Y, Costa P, Campilho A. DeepFixCX: Explainable privacy‐preserving image compression for medical image analysis. WIREs Data Mining and Knowledge Discovery 2023;13(4) View
  34. Nakayama L, de Matos J, Stewart I, Mitchell W, Martinez-Martin N, Regatieri C, Celi L. Retinal Scans and Data Sharing: The Privacy and Scientific Development Equilibrium. Mayo Clinic Proceedings: Digital Health 2023;1(2):67 View
  35. Hurvitz N, Ilan Y. The Constrained-Disorder Principle Assists in Overcoming Significant Challenges in Digital Health: Moving from “Nice to Have” to Mandatory Systems. Clinics and Practice 2023;13(4):994 View
  36. Geva R, Gusev A, Polyakov Y, Liram L, Rosolio O, Alexandru A, Genise N, Blatt M, Duchin Z, Waissengrin B, Mirelman D, Bukstein F, Blumenthal D, Wolf I, Pelles-Avraham S, Schaffer T, Lavi L, Micciancio D, Vaikuntanathan V, Badawi A, Goldwasser S. Collaborative privacy-preserving analysis of oncological data using multiparty homomorphic encryption. Proceedings of the National Academy of Sciences 2023;120(33) View
  37. Zahid A, Yadav U, Mistry S. Digital health services in Bangladesh—The need for a sustainable design framework. World Medical & Health Policy 2023;15(4):682 View
  38. Monachino G, Zanchi B, Fiorillo L, Conte G, Auricchio A, Tzovara A, Faraci F. Deep Generative Models: The winning key for large and easily accessible ECG datasets?. Computers in Biology and Medicine 2023;167:107655 View
  39. Thaldar D, Edgcumbe A, Donnelly D. How to interpret core concepts in POPIA? Recommendations on the draft Code of Conduct for Research. South African Journal of Science 2023;119(7/8) View
  40. McKay F, Treanor D, Hallowell N. Inalienable data: Ethical imaginaries of de-identified health data ownership. SSM - Qualitative Research in Health 2023;4:100321 View
  41. Brunette C, Harris E, Antwi A, Lemke A, Kerman B, Vassy J. Data from a national survey of United States primary care physicians on genetic risk scores for common disease prevention. Data in Brief 2024;52:109930 View
  42. Ormond K, Bavamian S, Becherer C, Currat C, Joerger F, Geiger T, Hiendlmeyer E, Maurer J, Staub T, Vayena E. What are the bottlenecks to health data sharing in Switzerland? An interview study. Swiss Medical Weekly 2024;154(1):3538 View
  43. Kovačević A, Bašaragin B, Milošević N, Nenadić G. De-identification of clinical free text using natural language processing: A systematic review of current approaches. Artificial Intelligence in Medicine 2024;151:102845 View
  44. Al Zaabi M, Alhashmi S. Big data security and privacy in healthcare: A systematic review and future research directions. Information Development 2024 View
  45. Pilgram L, Meurers T, Malin B, Schaeffner E, Eckardt K, Prasser F. The Costs of Anonymization: Case Study Using Clinical Data. Journal of Medical Internet Research 2024;26:e49445 View
  46. Cengiz N, Kabanda S, Moodley K, Carels V. Cross-border data sharing through the lens of research ethics committee members in sub-Saharan Africa. PLOS ONE 2024;19(5):e0303828 View
  47. Kondylakis H, Catalan R, Alabart S, Barelle C, Bizopoulos P, Bobowicz M, Bona J, Fotiadis D, Garcia T, Gomez I, Jimenez-Pastor A, Karatzanis G, Lekadir K, Kogut-Czarkowska M, Lalas A, Marias K, Marti-Bonmati L, Munuera J, Nikiforaki K, Pelissier M, Prior F, Rutherford M, Saint-Aubert L, Sakellariou Z, Seymour K, Trouillard T, Votis K, Tsiknakis M. Documenting the de-identification process of clinical and imaging data for AI for health imaging projects. Insights into Imaging 2024;15(1) View
  48. Veeraraghavan V, Daniel S, Dasari A, Aileni K, patil C, Patil S. Harnessing artificial intelligence for predictive modelling in oral oncology: Opportunities, challenges, and clinical Perspectives. Oral Oncology Reports 2024;11:100591 View
  49. Miletic M, Sariyar M. Challenges of Using Synthetic Data Generation Methods for Tabular Microdata. Applied Sciences 2024;14(14):5975 View
  50. Pesapane F, Cuocolo R, Sardanelli F. The Picasso’s skepticism on computer science and the dawn of generative AI: questions after the answers to keep “machines-in-the-loop”. European Radiology Experimental 2024;8(1) View
  51. Manzanares-Salor B, Sánchez D, Lison P. Evaluating the disclosure risk of anonymized documents via a machine learning-based re-identification attack. Data Mining and Knowledge Discovery 2024;38(6):4040 View
  52. Schreiber R, Koppel R, Kaplan B. What Do We Mean by Sharing of Patient Data? DaSH: A Data Sharing Hierarchy of Privacy and Ethical Challenges. Applied Clinical Informatics 2024;15(05):833 View
  53. Gonzalez Soltero R, Pino García D, Bellido A, Ryan P, Rodríguez-Learte A. FAIR data management: a framework for fostering data literacy in biomedical sciences education. BMC Medical Research Methodology 2024;24(1) View

Books/Policy Documents

  1. DeRenzo E, Singer E, Moss J. Ethical Considerations When Preparing a Clinical Research Protocol. View
  2. . Ethical Considerations When Preparing a Clinical Research Protocol. View
  3. Mensah E, Goderre J. Public Health Informatics and Information Systems. View
  4. Redman B. Handbook of Bioethical Decisions. Volume II. View
  5. Kogut-Czarkowska M. GDPR Requirements for Biobanking Activities Across Europe. View
  6. Kanwal N, Janssen E, Engan K. Frontiers of Artificial Intelligence, Ethics, and Multidisciplinary Applications. View
  7. Lien C, Deng R, Fuh J, Ting Y, Yang A. Medical Image and Signal Analysis in Brain Research. View