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Dying in Darkness: Deviations From Data Sharing Ethics in the US Public Health System and the Data Genocide of American Indian and Alaska Native Communities

Dying in Darkness: Deviations From Data Sharing Ethics in the US Public Health System and the Data Genocide of American Indian and Alaska Native Communities

Deidentification can be a problematic approach to mitigating privacy risks in many public health contexts because it can cause both individual and group harm that offsets its benefits [38-40]. In the absence of informed consent, data controllers frequently rely on deidentification before sharing data. There are 2 principal motivations for deidentifying data [27]. First, laws might allow data to be used or shared with fewer restrictions if deidentified.

Cason D Schmit, Meghan Curry O’Connell, Sarah Shewbrooks, Charles Abourezk, Fallon J Cochlin, Megan Doerr, Hye-Chung Kum

J Med Internet Res 2025;27:e70983

Using Large Language Models to Abstract Complex Social Determinants of Health From Original and Deidentified Medical Notes: Development and Validation Study

Using Large Language Models to Abstract Complex Social Determinants of Health From Original and Deidentified Medical Notes: Development and Validation Study

However, deidentification processes involve obfuscation of important details, including dates and locations. This may alter the semantic underpinnings of a given text, making it difficult for an LLM to accurately identify and label SDo H within a given note.

Alexandra Ralevski, Nadaa Taiyab, Michael Nossal, Lindsay Mico, Samantha Piekos, Jennifer Hadlock

J Med Internet Res 2024;26:e63445

An Extensible Evaluation Framework Applied to Clinical Text Deidentification Natural Language Processing Tools: Multisystem and Multicorpus Study

An Extensible Evaluation Framework Applied to Clinical Text Deidentification Natural Language Processing Tools: Multisystem and Multicorpus Study

Deidentification is the process of tagging and removing personally identifiable information (PII) to prevent incidental privacy breaches. Unfortunately, manual deidentification is an expensive and error-prone process [1,2], and automated deidentification remains an unsolved challenge [3,4]. Since the first published automated deidentification system [5], a variety of systems using a range of technologies have been released.

Paul M Heider, Stéphane M Meystre

J Med Internet Res 2024;26:e55676

Best Practices in Evolving Privacy Frameworks for Patient Age Data: Census Data Study

Best Practices in Evolving Privacy Frameworks for Patient Age Data: Census Data Study

The HIPAA (Health Insurance Portability and Accountability Act) of 1996, in its Safe Harbor approach to the deidentification of data sets [3], gives a maximum age of 90 years to which all higher values should be lowered. The risk of reidentification, or “disclosure risk,” is related to the amount of utility that a data set of personal information contains. As the risk is reduced, so is the value of the data set in terms of its usefulness.

Colin Moffatt, Jonah Leshin

JMIR Form Res 2024;8:e47248

Unlocking the Secrets Behind Advanced Artificial Intelligence Language Models in Deidentifying Chinese-English Mixed Clinical Text: Development and Validation Study

Unlocking the Secrets Behind Advanced Artificial Intelligence Language Models in Deidentifying Chinese-English Mixed Clinical Text: Development and Validation Study

As a result, the deidentification step becomes a critical data processing step to protect the privacy of individuals. However, the study by Cannon and Lucci [2] indicated that up to 65% of important clinical information is recorded in unstructured texts in medical reports written by medical personnel. Compared with structured data, which can be deidentified by encrypting private patient information fields, the deidentification of unstructured data is more challenging.

You-Qian Lee, Ching-Tai Chen, Chien-Chang Chen, Chung-Hong Lee, Peitsz Chen, Chi-Shin Wu, Hong-Jie Dai

J Med Internet Res 2024;26:e48443

OpenDeID Pipeline for Unstructured Electronic Health Record Text Notes Based on Rules and Transformers: Deidentification Algorithm Development and Validation Study

OpenDeID Pipeline for Unstructured Electronic Health Record Text Notes Based on Rules and Transformers: Deidentification Algorithm Development and Validation Study

The goal of the deidentification process in unstructured EHR text notes is to identify SHI by inspecting entire medical records. Deidentification by medical experts is time-consuming, error prone, and expensive [6]. In contrast, automated deidentification techniques based on recent advances in artificial intelligence can be used to simplify the entire process [7]. Automated deidentification techniques require an annotated corpus to identify SHI [8].

Jiaxing Liu, Shalini Gupta, Aipeng Chen, Chen-Kai Wang, Pratik Mishra, Hong-Jie Dai, Zoie Shui-Yee Wong, Jitendra Jonnagaddala

J Med Internet Res 2023;25:e48145

Web-Based Application Based on Human-in-the-Loop Deep Learning for Deidentifying Free-Text Data in Electronic Medical Records: Development and Usability Study

Web-Based Application Based on Human-in-the-Loop Deep Learning for Deidentifying Free-Text Data in Electronic Medical Records: Development and Usability Study

However, manual deidentification has been proven to be a time-consuming and labor-intensive task [6]. In the past decade, researchers have investigated many different automated deidentification approaches including rule-based matching [7-9] and machine learning (ML) models [10-14]. Hand-written regular expressions and ad hoc knowledge dictionaries are used in rule-based deidentification approaches for a specific free-text data set [15].

Leibo Liu, Oscar Perez-Concha, Anthony Nguyen, Vicki Bennett, Victoria Blake, Blanca Gallego, Louisa Jorm

Interact J Med Res 2023;12:e46322

Consent and Deidentification of Patient Images in Dermatology Journals: Observational Study

Consent and Deidentification of Patient Images in Dermatology Journals: Observational Study

Nonetheless, requirements for the deidentification of patient images and for the acquisition of consent to publish such images vary across governing bodies and journals. Our objective was to describe leading dermatology journals’ instructions regarding deidentification and consent to publish patient images as well as the content and readability of consent forms. This study was exempt from institutional review board review as data were publicly available.

Japbani K Nanda, Michael Armando Marchetti

JMIR Dermatol 2022;5(3):e37398

Current Landscape of Generative Adversarial Networks for Facial Deidentification in Dermatology: Systematic Review and Evaluation

Current Landscape of Generative Adversarial Networks for Facial Deidentification in Dermatology: Systematic Review and Evaluation

Facial features, tattoos, jewelry, birthmarks, and other identity-informative background features are additional features that are considered identifying; facial feature deidentification is considered the most challenging task, given a lack of expert consensus and a lack of testing infrastructure and quantitative metrics for adequacy of automatic and manual facial image deidentification algorithms.

Christine Park, Hyeon Ki Jeong, Ricardo Henao, Meenal Kheterpal

JMIR Dermatol 2022;5(2):e35497