Non identifiable data. Does the big data project qualify for expedited review? B.
Non identifiable data. For example, if k equals five, this means the smallest set of records that have identical data across a specific set of variables is five, in turn making it harder to de-anonymize patient data. In the United States, privacy laws apply when Non-PII data typically includes data collected by browsers and servers using cookies. This data can include demographic information, behavioral patterns, or any other type of data that, on its own, does not allow for the identification of a specific person. They suggest creating incentives, recognizing the benefits of using non-identifiable data, enabling its creation without the need for additional consent, and having acceptable risk thresholds based on established precedents. Sensitive Personal Data and Government-Related Data by Countries of Concern or Covered Persons,” which restricts data brokerage transactions involving access to bulk U. This applies to anonymized data and to de-identified data when the researchers receiving the data from the data custodian do not have access to a study key (or any method to re-identify). Personally Identifiable Information (PII) is defined as:Information that can be used to distinguish or trace an individual’s identity, either alone or when combined with other information that is linked or linkable to a specific individual. 3ADVISORY NOTE: Investigators should consider the criminal laws applicable to the subject. Generally, this only occurs when the HIPAA authorization explicitly asked for permission to share identifiable data. The delineation between personal data an Aug 1, 2025 · Learn about Personally Identifiable Information (PII), including its definition, types, examples, and essential tips for safeguarding personal data against breaches. Creation of Non-Identifiable Data Sample Clauses Creation of Non-Identifiable Data. Also, posterior and prior of an identifiable parameter can have high overlap – for instance, when the prior is informative and data only confirms prior knowledge. Sometimes actual pseudonyms are used to mask the sensitive data fields. A data set may be identifiable under the Common Rule if it contains: initials, address, zip code, phone number, gender, age, birth date, occupation, employer, racial or ethnic group, type of biopsy performed, date sample taken, diagnosis, primary care physician, referring physician, and genealogy. The key distinction between RHI and PHI is that PHI is associated with or derived from a healthcare service event. 2). The purpose of creating non-identifiable data is to be able to use and disclose that data for secondary purposes. Jul 29, 2022 · Moreover, there are examples when posterior of a non-identifiable parameter differs from its prior (Koop et al, 2013). Public Use Files (PUFs) are non-identifiable data that do not contain any protected health information (PHI) or personally identifiable information (PII). Non-Personal Data (NPD) is electronic data that does not contain any information that can be used to identify a natural person. May 18, 2020 · A non-identifiable model is one that has parameters that cannot be dis-entangled (ie estimated distinctly) given the likelihood alone. How Do De-Identified and Anonymized Data Drive Clinical Trials? While the federal regulations that govern human subject research refer to ‘identifiable private information’, ‘identifiable biospecimen’, and ‘identifiers’, they do not specifically define data elements that could be used to identify subjects. Personally identifiable information (PII), is information that can be used on its own or with other information to identify, contact, or locate a single person, or to identify an individual in context. Jul 22, 2025 · CMS enters into Data Use Agreements (DUAs) with most data requesters for disclosures of protected health information (PHI) and/or personally identifiable information (PII) to ensure that data requesters adhere to CMS privacy and security requirements and data release policies. S. Sep 17, 2021 · This includes guidelines, standards, and regulator orders and opinions. The UK GDPR covers the processing of personal data in two ways: personal data processed wholly or partly by automated means (that is, information in electronic form); and personal data processed in a non-automated manner which forms part of, or is intended to form part of, a ‘filing system’ (that is, manual information in a filing system). Understanding Identifiable Data What is identifiable data? Within the context of human subjects research, the definition of identifiable data can sometimes be complex. Anonymization can include the removal of direct identifiers, such as […] Sep 1, 2019 · This article provides an introductory overview to the topic. 101 (b) (4) focuses, in part, on: (1) whether the data or specimens are existing at the time the research is PII – Personally Identifiable Information. Different regulations specify requirements to This topic page contains a curation of the IAPP's guidance, coverage, analysis and relevant resources covering how to build a privacy program from the ground up. ” This is because the regulatory definition of “human subjects research” is met whenever an investigator obtains, uses, or generates identifiable private information or identifiable biospecimens. This ranges from fully identifiable personal data, to data that has been through a robust anonym sation process. This type of information is typically collected and used for various purposes such as analytics, research, or advertising targeting without revealing the individuals’ identity. The term “personal information” generally denotes identifiable information about an individual. Information is non-identifiable if it does not identify an individual, for all practical purposes, when used alone or combined with other available information. This presents a major concern for data controllers that seek to anonymize or pseudonymize data. dentifiability. Data ceases to be personal when it is made anonymous, and an individual is no longer identifiable. Feb 3, 2025 · A covered entity may determine that health information is not individually identifiable health information only if: (1) A person with appropriate knowledge of and experience with generally accepted statistical and scientific principles and methods for rendering information not individually identifiable: Non-Identifiable Data means any and all technical information gathered from Devices which are not directly Customer identifiable, or any aggregated, summarized or statistical non- identifiable data derived from the Customer -specific or other non -identifiable data. Generally, the data is collected with a “Study ID,” and a linkage Description: Non-identifiable information refers to data that does not reveal the identity of individuals, often used in data anonymization processes. evaluating datasets and working with permissions and licences. Jun 4, 2019 · Having determined under the second question above that a research activity involves human subjects because the investigators are obtaining identifiable private information or specimens, assessment under the exemption at 45 CFR 46. Is the researcher qualified? C. 3%) were uniquely matched with the HES APC dataset. Jul 24, 2024 · The growing volume of data collected in our digital age amplifies the significance of distinguishing between sensitive and non-sensitive PII, given their different handling requirements and associated risks. De-identified, pseudonymised, key-coded, masked, anonymised in context, effectively anonymised, non-disclosive, non-identifiable, de-identified data for limited access. Anonymized data is data that at a previous point in time was identifiable, but the data held by the data custodian has now been stripped of identifiers and any links to identifying information. Oct 21, 2025 · CMS offers files from aggregate data to individual person level data. According to the federal regulations governing human subjects research, data is considered identifiable if the identity of the participant is known or may readily be ascertained. The abbreviation PII is widely used in the United States, but the phrase it abbreviates has four common variants based on personal or personally, and identifiable or This guidance outlines the key differences between anonymisation and pseudonymisation, how they apply to personal data processing, and how to implement them in line with the latest ICO recommendations Dec 30, 2024 · Adopting these practices fosters trust and compliance in data governance. In some cases, even though a model is non-identifiable, it is still possible to learn the true values of a certain subset of the model parameters. Feb 14, 2024 · The GLBA has covered the customers’ financial data under the definition of Non-Public Personal Information (NPI) and established various data privacy and security provisions. e. The intuitive idea is that you can preserve the privacy of individuals whose data is being used if you remove information that allows those individuals to be identified. Personal data, confidential information, patient identifiable information, confidential personal information. 5B clarifies that secondary use of non-identifiable data does not require consent but does require REB review. sensitive personal data and transactions involving access to bulk human genomic data (now expanded to certain ‘omic data) or Oct 3, 2022 · Though there is no binary categorization of “identifiable vs. Department of Labor (DOL) contractors are reminded that safeguarding sensitive information is a critical Creating non-identifiable information as risk management (tiered risk levels based on identifiability) Re-identification stress tests – motivated intruder Data consolidation makes creating non-identifiable data easier Use of controls: data sharing agreements, as well as security and privacy assessments Mar 4, 2024 · The non-identifiable data can be kept intact while the identifiable data should be stored separately and securely. Aug 21, 2025 · A standard approach to deal with structurally non-identifiable models is to use reparameterisation, which typically focuses on the structure of the mathematical model without accounting for the impact of noisy, finite data. Note that Art 5. [list] [li]Coded Data are coded when a link will exist between a unique code and individual subjects’ identifiers such as name, medical record number, email address or telephone number. Jul 12, 2023 · Learn how to distinguish between anonymous, de-identified and anonymized aggregated data to ensure compliance with privacy regulations. This study then proposes a non-readily identifiable DC analysis only sharing non-readily identifiable data for multiple medical datasets including personal information. Apr 5, 2021 · Using non-identifiable data linkage, a total of 170 patients (86. Apr 24, 2023 · Example: Student A is provided with a deidentified, non-coded data set, the use of the data does not constitute research with human subjects because there is no interaction with any individual and no identifiable private information will be used. Mar 17, 2021 · Aggregate data is not considered to be identifiable at all, and the risk of re-identification is non-existent, because no individual-level data is present. AGGREGATE AND NON-IDENTIFIABLE INFORMATION We may collect, use, and disclose aggregate, anonymous, and other non-identifiable data about users for marketing, advertising, research, compliance, or other purposes. Does the big data project involve "human subjects?" D. Executive Summary This report is a descriptive analysis of the practices used by a sample of Canadian organizations to render their data non-identifiable. Non-Identifiable Data Files contain non-identifiable person-specific information and are within the public domain. Text PHI – Text Protected Health Information Note: See Genomic Data Risk Tiers for information on the risk of re-identification for different types of genomic data, and whether they should be treated as PHI, LDS, or data with no PHI or PII. Feb 10, 2023 · Discover the differences between PI data & PII data, explore sensitive information types, and compare GDPR, CCPA, & CPRA in this comprehensive data privacy guide. Both terms cover common ground, classifying information that could reveal an individual’s identity directly or indirectly. We do an extensive evaluation of 7 data generation algorithms for movie and song recommendations in 28 diferent settings, from which we construct Pareto frontiers of Realism vs Identifiability. This information sheet is about the secondary use of data during a research project. How Can Captain Compliance Help With De-Identifying Data? De-identified data is a powerful tool in the quest for innovation and privacy. Data security and data confidentiality review is included within the IRB review process; it is built into the regulations governing human subjects and Harvard institutional policy requirements. Non-Identifiable Data Files do not contain any protected health information (PHI) or personally identifiable information (PII). However, any subsequent use of the data collected, would be either anonymous or de-identified depending on whether there is a link back to the identifiable information. Electronic access to identifiable data in a research data repository must be controlled through appropriate access controls, such as usernames and passwords, in accordance with VA security policies. Oct 15, 2025 · Non-personally identifiable information (non-PII) is a piece of data that cannot be used on its own to trace or identify a person. Collecting such information is primarily for analytical, research, or A model that fails to be identifiable is said to be non-identifiable or unidentifiable: two or more parametrizations are observationally equivalent. based on weighted sums of normal probability distributions) Sep 17, 2025 · DefinitionsLast updated: September 17, 2025 May 1, 2020 · These can be confusing adjectives when referring to study data. CMS maintains three different categories of data files: identifiable data files, limited data set files, and public use files. The organizations studied represent some of the most sophisticated users of data and have invested heavily to do so in a responsible manner. In practice, there is not a single widely-used method for anonymizing data. means anonymized generic statistical information derived from such Customer Meta- Data (but not the Customer Data itself) aggregated with statistical information from other customers. Such information includes demographic data, aggregate statistics, anonymized data, or information where all personal identifiers are either removed or appropriately encrypted. While the National Statement does not use the terms ‘identifiable’, ‘re-identifiable’ or ‘non-identifiable’ as descriptive research data categories due to ambiguities in their meanings, you will see these in research language and in the Research Ethics Platform application form. Mean Under the Common Rule? Definition for “Identifiable”: Identifiable private information or identifiable biospecimens refers to private information or biospecimens for which the identity of the subject is or may readily be ascertained by the investigator or associated with the information or biospecimens However, data that leaves the covered entity and is transferred to a non-HIPAA covered entity of Harvard is not considered to be HIPAA regulated data. This concept is essential for data privacy as it lets organisations analyse trends without compromising personal identities. Device type, browser type, plugin details, language preference, time zone, screen size are few examples of non PII data. But for data to be truly anonymized, the anonymization must be irreversible. Jan 14, 2025 · The U. A subset of non-identifiable data are those that can be linked with other data so it can be known that they are about the same data subject, although the person’s identity remains unknown. We recommend that any modeling study should document whether a model is non-identifiable, the source of potential non-identifiability, and how this affects intended project outcomes. May 26, 2025 · Non-PII, or non-personally identifiable information, refers to data that can’t identify a specific individual. See policy. The privacy level of the data file dictates if a DUA is needed, the request process, and the level of review required: Jul 1, 2023 · In statistics, are there any common strategies to deal with non-identifiable models? For example, I have heard that mixture models (i. This category encompasses data that, while not inherently identifiable, can still help pinpoint a person when paired with other sensitive or non-sensitive information. Non-sensitive PII is sometimes referred to as public PII or quasi-PII because it can be obtained from public sources. By removing identifiable elements, organizations can unlock the potential of their datasets while respecting individual privacy. This is why it is critical to know the difference between sensitive PII vs non sensitive PII. The Regulatory Citation and How It Applies: Secondary research for which consent is not required: Secondary research uses of identifiable private information or identifiable biospecimens, if at least one of the following criteria is met: The identifiable private information or identifiable Apr 13, 2025 · In addition to direct PII and indirect PII, it is also possible to have sensitive PII and non-sensitive PII. Aug 28, 2023 · One privacy-preserving mechanism used in data analytics is to anonymize or de-identify the data. For REB review purposes, non-identifiable data covers both anonymized and de-identified data. Aug 6, 2024 · Personally identifiable information (PII) and personal data are two classifications of data that often confuse organizations that collect, store and analyze such data. Jan 29, 2025 · For data privacy compliance, it’s crucial to know the difference between Personally Identifiable Information (PII), Personal Information (PI), and sensitive data. Informed by the results of that study, we examine three specific questions: (a) is data with residual reidentification risk still personal information, (b Data are individually identifiable per the Federal Policy for the Protection of Human Subjects (codified at 45 CFR part 46, and known as the “Common Rule”) when the identity of a subject is, or may be, readily ascertained by the investigator or associated with the information. The methods used consisted of on-line discussions and interviews with Steering Group and general members of CANON. Apr 5, 2021 · Methods Two methods of linkage were compared, using identifiable (NHS number, date of birth, postcode, gender) and non-identifiable data (hospital trust, age in years, admission, discharge and operation dates, operation and diagnosis codes). Jan 10, 2018 · What is Non-PII? Non-personally identifiable information (non-PII) is data that cannot be used on its own to identify, trace, or identify a person, so basically the opposite of PII. It steps through obtaining exemption from ethical review when using existing data, as well as finding and re-using data i. Aug 14, 2023 · Secondary Use research is subject to IRB oversight if investigators “obtain identifiable private data or identifiable biospecimens. The bar is very high for data to be considered ‘anonymous’ under GDPR, which means lots of purposes will use data that still counts a Sep 25, 2023 · Many organizations argue they protect privacy through the use of aggregate, de-identified or anonymous data, but do users understand what that means? Jan 20, 2025 · Non-personally identifiable information (non-PII) is a type of information that cannot be leveraged to identify or contact an individual directly. 5. Department of Justice (DOJ) has finalized its rule on “Preventing Access to U. Incredibly, this variety of PII definitions and subsets comes from only regulatory sources. So, even though each of these data points on their own would be non-identifiable, storing them together makes it possible to uniquely identify an individual. Included below is a mini-glossary to help you with your IRB applications. l) Data Management: Transmission and transfer of identifiable data must be performed in accordance with VA security policies. The Centers for Medicare & Medicaid Services (CMS) makes certain Non-Identifiable Data Files (also known as public use files or PUFs) available for order. Aug 17, 2022 · Here’s something that’ll confuse you: Technically, all personally identifiable information (PII) is considered personal data, but not all personal data is considered PII. non-identifiable,” you can think of de-identification in terms of the degree to which the data has been de-identified, and the Jun 29, 2020 · Researchers working with human subjects will often hear the phrase, “remove all identifiable data” or, “protect identifiable data with reliable security measures. Mar 10, 2020 · Key PointsIn this article, we examine the concept of non-personal data from a law and computer science perspective. This reveals multiple insights into the performance of diferent synthetic data generation methods along diferent points on this curve. Description: Non-identifiable data refers to information that cannot be used to identify an individual, often achieved through anonymization techniques. As such, IRBs routinely defer to the 18 identifiers described in the Health Insurance Portability & Accountability Act (HIPAA) regardless of Oct 1, 2023 · The results reveal that the shared intermediate representations are readily identifiable to the original data for supervised learning. Thus, research studies that use medical records as a source of person-identifiable research data are using PHI, and interventional clinical studies where treatments are being compared for safety and effectiveness would create PHI. For datasets containing identifiable data from human subjects: Approval to share identifiable data is granted only under limited circumstances. Aug 16, 2010 · A subset of non-identifiable data are those that can be linked with other data so it can be known that they are about the same data subject, although the person’s identity remains unknown. Jun 30, 2021 · Research with either anonymous data or de-identified data refers to the secondary use of data previously collected for other purposes. Baseline patient characteristics were not significantly different between the two methods of data linkage. . Outcome measures included: matching success, patient demographics, all-cause mortality and subsequent cardiac intervention. This article describes the differences between the aggregate, public use files, the limited data sets, and research identifiable files. The Centers for Medicare & Medicaid Services (CMS) makes PUFs freely available for download. Today we’ll define three major terms: personally identifiable information, non-personally identifiable information, and personal data. The main The applicability and scope of many privacy laws around the world depend upon how the term “personal data” is defined. What separates PII from non-PII data? Learn how marketers can leverage both while adhering to privacy standards for ethical data use If the student is provided with a de-identified, non-coded data set, the use of the data does not constitute research with human subjects because there is no interaction with any individual and no identifiable private information will be used. Overall, data may be identifiable if any combination of variables could potentially identify a subject. This data is crucial in the context of privacy and data protection, as it allows for the analysis and use of information without compromising individuals’ identities. The Centers for Medicare & Medicaid Services (CMS) is responsible for administering the Medicare, Medicaid and State Children's Health Insurance Programs (SCHIP), as well as a number of health oversight programs. Define Non-Identifiable Information. Published 2021 Project Leader (s) Khaled El Emam Summary This project documented current practices used by Canadian organizations to generate, use, and disclose non-identifiable data. Many of these efforts will need to (re)define what non-identifiable data is and how its development, use, and disclosure should be regulated, so that the great many societal benefits of using data can be realized while still protecting privacy. Personally identifiable information (PII) is any information connected to a specific individual that can be used to uncover or steal that individual's identity, such as their social security number, full name, email address or phone number. Mar 18, 2025 · What is Personally Identifiable Information (PII)? Learn its meaning, types, and examples of PII data, including sensitive and non-sensitive PII, and how to protect it. Personal data is often referred to as “personally identifiable information” (PII), and we use the terms interchangeably here. The App may create de- identified information records from personal information by excluding certain information (such as your name) that makes the information personally identifiable to you. A data set Sep 4, 2025 · If you are receiving data and/or specimens that are de-identified or coded with identifiers are kept separately, use the Human Subjects Research Decision Tree to determine whether human subjects are involved in your proposed research study. Understand Non-Personally Identifiable Information (Non-PII) and its significance in safeguarding privacy and data security online. Does the big data project qualify for expedited review? B. 1 PII is foundational to any privacy regulatory regime in its role of a jurisdictional trigger. The format of the data, In assessing this consideration, an IRBs determination may hinge on whether the information obtained by a big data researcher is individually identifiable and private A. Define Non-Identifiable Aggregated Data. Sep 1, 2022 · Although the new EU data protection framework includes novel pan-EU limits based on notions of non-identification, these provisions cannot be construed in a sweeping or linear fashion. If we want to fit such a model, something extra is needed. Patients from a bespoke clinical procedural registry were matched to routine administrative data using identifiable and non-identifiable methods with equivalent matching success rates, similar baseline characteristics and similar 2-year outcomes. Data that has been encrypted de-identified or pseudonymized but can be used to re-identify a person is still personal data. The authors advocate for clear regulations to diminish uncertainty and avoid inaction. Aggregated data, grouped data, pooled data, statistics. means information, data, and other content included in the Submitted Data that does not identify any Authorized User or other individual, including statistical and performance information relating to the provision and operation of the Platform. Another way to say Non-identifiable Data? Synonyms for Non-identifiable Data (other words and phrases for Non-identifiable Data). Personally Identifiable Information (PII) Personally identifiable information, or PII, is information that organizations may hold on individuals that can be tied to the individuals’ identities. ” Identifiable data is vulnerable, as it includes information or records about the research participant that allows others to identify that person. This means it is not possible to pick out one individual from the dataset to attempt to re-identify, because all information is presented at the group level. Personally identifiable data can only include information which is not being used to target a specific individual on- or offline and, although GDPR controllers cannot generally be obliged to render such personal We recently reviewed how non-identifiable data, such as synthetic data, is regulated in Canadian privacy legislation and interviewed 13 of the 14 provincial, territorial and federal privacy regulators to get their perspectives on the topic. Personal data Personal data, also known as personal information or personally identifiable information (PII), [1][2][3] is any information related to an identifiable person. Thus, it can either be data that has no personal information to begin with (such as weather data, stock prices, data from anonymous IoT sensors); or it is data that had personal data that was subsequently pseudoanonymized (for example, identifiable strings substituted Under GDPR, data is categorically either personal data or non-personal data. skzupch9aaeybpvsmyngaql0yjil0oibj1tq4wrakw2gcrxq