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Medical data, including patients' identity information, health status, disease diagnosis and treatment, and
biogenetic A biogenic substance is a product made by or of life forms. While the term originally was specific to metabolite compounds that had toxic effects on other organisms, it has developed to encompass any constituents, secretions, and metabolites of p ...
information, not only involve patients' privacy but also have a special sensitivity and important value, which may bring physical and mental distress and property loss to patients and even negatively affect social stability and national security once leaked. However, the development and application of medical AI must rely on a large amount of medical data for
algorithm In mathematics and computer science, an algorithm () is a finite sequence of rigorous instructions, typically used to solve a class of specific problems or to perform a computation. Algorithms are used as specifications for performing ...
training, and the larger and more diverse the amount of data, the more accurate the results of its analysis and prediction will be. However, the application of big data technologies such as data collection, analysis and processing, cloud storage, and information sharing has increased the risk of data leakage. In the United States, the rate of such breaches has increased over time, with 176 million records breached by the end of 2017. There have been 245 data breaches of 10,000 or more records, 68 breaches of the healthcare data of 100,000 or more individuals, 25 breaches that affected more than half a million individuals, and 10 breaches of the personal and protected health information of more than 1 million individuals.


Black market for health data

In February 2015 an
NPR National Public Radio (NPR, stylized in all lowercase) is an American privately and state funded nonprofit media organization headquartered in Washington, D.C., with its NPR West headquarters in Culver City, California. It differs from other ...
report claimed that
organized crime Organized crime (or organised crime) is a category of transnational, national, or local groupings of highly centralized enterprises run by criminals to engage in illegal activity, most commonly for profit. While organized crime is generally th ...
networks had ways of selling health data in the
black market A black market, underground economy, or shadow economy is a clandestine market or series of transactions that has some aspect of illegality or is characterized by noncompliance with an institutional set of rules. If the rule defines the ...
. In 2015 a
Beazley Group Beazley PLC is the British parent company of specialist insurance businesses with operations in Europe, the US, and Asia. Beazley manages six Lloyd's syndicates. Beazley plc is incorporated in the UK. It is listed on the London Stock Exchange and ...
employee estimated that medical records could sell on the black market for -50. Crime is the primary cause of medical data breaches.


How data is lost

Theft,
data loss Data loss is an error condition in information systems in which information is destroyed by failures (like failed spindle motors or head crashes on hard drives) or neglect (like mishandling, careless handling or storage under unsuitable conditions ...
, hacking, and unauthorized account access are ways in which medical data breaches happen. Among reported breaches of medical information in the United States networked
information systems An information system (IS) is a formal, sociotechnical, organizational system designed to collect, process, store, and distribute information. From a sociotechnical perspective, information systems are composed by four components: task, people ...
accounted for the largest number of records breached. There is a large number of data breaches happening in the US health care system, among business associates of the health care providers that continuously gain access to patients' data.


List of data breaches

*In May 2021, the
Health Service Executive The Health Service Executive (HSE) ( ga, Feidhmeannacht na Seirbhíse Sláinte) is the publicly funded healthcare system in Ireland, responsible for the provision of health and personal social services. It came into operation on 1 January 2005 ...
in the
Republic of Ireland Ireland ( ga, Éire ), also known as the Republic of Ireland (), is a country in north-western Europe consisting of 26 of the 32 counties of the island of Ireland. The capital and largest city is Dublin, on the eastern side of the island. ...
was the victim of a
cyberattack A cyberattack is any offensive maneuver that targets computer information systems, computer networks, infrastructures, or personal computer devices. An attacker is a person or process that attempts to access data, functions, or other restricte ...
involving
ransomware Ransomware is a type of malware from cryptovirology that threatens to publish the victim's personal data or permanently block access to it unless a ransom is paid off. While some simple ransomware may lock the system without damaging any files, ...
, in the Health Service Executive cyberattack, with admission records and test results present in a sample of the data reviewed by the
Financial Times The ''Financial Times'' (''FT'') is a British daily newspaper printed in broadsheet and published digitally that focuses on business and economic current affairs. Based in London, England, the paper is owned by a Japanese holding company, Nik ...
. *In October 2018, the
Centers for Medicare and Medicaid Services The Centers for Medicare & Medicaid Services (CMS), is a federal agency within the United States Department of Health and Human Services (HHS) that administers the Medicare program and works in partnership with state governments to administer M ...
in the US reported that around 75,000 individual records had been affected by a data breach that took place through the ACA Agent and Broker Portal. *In 2018,
Social Indicators Research ''Social Indicators Research'', founded in 1974, is a journal that publishes research results dealing with the measurement of the quality of life. Editors * Editor-in-chief: Filomena Maggino, Sapienza University of Rome, Italy * SINET selection ...
published the scientific evidence of 173,398,820 (over 173 million) individuals affected in USA from October 2008 (when the data were collected) to September 2017 (when the statistical analysis took place). *In 2015,
Anthem Inc. Elevance Health, Inc. is an American health insurance provider. The company's services include medical, pharmaceutical, dental, behavioral health, long-term care, and disability plans through affiliated companies such as Anthem Blue Cross and ...
lost data for 37 million people in the Anthem medical data breach *In 2014 4.5 million people using Complete Health Systems had their data stolen *In 2013-14 1 million people using Montana Department of Public Health and Human Services had their data stolen *In 2013 4 million people using Advocate Health and Hospitals Corporation had their data stolen *In 2011 4.9 million users of
Tricare Tricare (styled TRICARE) is a health care program of the United States Department of Defense Military Health System. Tricare provides civilian health benefits for U.S Armed Forces military personnel, military retirees, and their dependents, ...
services had their data stolen due to an employee error by
Science Applications International Corporation Science Applications International Corporation (SAIC), Inc. is an American technology company headquartered in Reston, Virginia that provides government services and information technology support. History The original SAIC was created in 19 ...
*In 2011 1.9 million people using
Health Net Health Net, LLC, a subsidiary of Centene Corporation, is an American health care insurance provider. Health Net and its subsidiaries provide health plans for individuals, families, businesses and people with Medicare and Medicaid, as well as com ...
had their data stolen *In 2011 1 million people using
Nemours Foundation The Nemours Foundation is a non-profit organization in Jacksonville, Florida, created by philanthropist Alfred I. du Pont in 1936, and dedicated to improving the health of children. The Foundation operates the Nemours Children's Hospital, Delaware ...
had their data stolen *In 2010 6800 people using
New York-Presbyterian Hospital The NewYork-Presbyterian Hospital is a nonprofit academic medical center in New York City affiliated with two Ivy League medical schools, Cornell University and Columbia University. The hospital comprises seven distinct campuses located in the N ...
and
Columbia University Medical Center NewYork-Presbyterian/Columbia University Irving Medical Center (NYP/CUIMC), also known as the Columbia University Irving Medical Center (CUIMC), is an academic medical center and the largest campus of NewYork-Presbyterian Hospital. It includes Co ...
had their data breached. In response, those organizations agreed to pay the
United States Department of Health and Human Services The United States Department of Health and Human Services (HHS) is a cabinet-level executive branch department of the U.S. federal government created to protect the health of all Americans and providing essential human services. Its motto is ...
a million dollar fine. *In 2009 1 million people using
BlueCross BlueShield of Tennessee BlueCross BlueShield of Tennessee is the largest health benefit plan company in Tennessee. It is an independent, not-for-profit organization governed by its own board of directors. The organization is part of a nationwide association of health ...
had their data stolen


Regulation

In the United States, the
Health Insurance Portability and Accountability Act The Health Insurance Portability and Accountability Act of 1996 (HIPAA or the Kennedy– Kassebaum Act) is a United States Act of Congress enacted by the 104th United States Congress and signed into law by President Bill Clinton on August 21, 1 ...
and
Health Information Technology for Economic and Clinical Health Act The Health Information Technology for Economic and Clinical Health Act, abbreviated the HITECH Act, was enacted under Title XIII of the American Recovery and Reinvestment Act of 2009 (). Under the HITECH Act, the United States Department of Health ...
require companies to report data breaches to affected individuals and the
federal government A federation (also known as a federal state) is a political entity characterized by a union of partially self-governing provinces, states, or other regions under a central federal government ( federalism). In a federation, the self-gover ...
. * Health Information Privacy
Health Insurance Portability and Accountability Act The Health Insurance Portability and Accountability Act of 1996 (HIPAA or the Kennedy– Kassebaum Act) is a United States Act of Congress enacted by the 104th United States Congress and signed into law by President Bill Clinton on August 21, 1 ...
of 1996 (HIPAA). - 45 CFR Parts 160 and 164, Standards for Privacy of Individually Identifiable Health Information and Security Standards for the Protection of Electronic Protected Health Information. HIPAA includes provisions designed to save health care businesses money by encouraging electronic transactions, as well as regulations to protect the security and confidentiality of patient information. The Privacy Rule became effective April 14, 2001, and most covered entities (health plans, health care clearinghouses, and health care providers that conduct certain financial and administrative transactions electronically) had until April 2003 to comply. This security provision became effective April 21, 2003. The
Health Insurance Portability and Accountability Act The Health Insurance Portability and Accountability Act of 1996 (HIPAA or the Kennedy– Kassebaum Act) is a United States Act of Congress enacted by the 104th United States Congress and signed into law by President Bill Clinton on August 21, 1 ...
(
HIPAA The Health Insurance Portability and Accountability Act of 1996 (HIPAA or the Kennedy– Kassebaum Act) is a United States Act of Congress enacted by the 104th United States Congress and signed into law by President Bill Clinton on August 21, 1 ...
) is the baseline set of federal regulations governing medical information. It does three things: i. i. i.Establish a structure for how personal health information is disclosed and establish the rights of individuals with respect to health information; ii.Specify security standards for the retention and transmission of electronic patient information; iii.Need a common format and data structure for the electronic exchange of health information. * California-Specific Laws California’s medical privacy laws, primarily the Confidentiality of Medical Information Act (CMIA), the data breach sections of the
Civil Code A civil code is a codification of private law relating to property, family, and obligations. A jurisdiction that has a civil code generally also has a code of civil procedure. In some jurisdictions with a civil code, a number of the core ar ...
, and sections of the Health and Safety Code, provide HIPAA-like protections although the terminology is different. HIPAA establishes a federal "minimum standard" that applies where there are gaps in California law, and HIPAA also specifies that stricter state laws will override or supersede HIPAA. California's health care privacy laws apply to providers who provide personal health records (PHR), while HIPAA only applies when the provider providing the PHR is a business associate of a covered entity.
Federal law Federal law is the body of law created by the federal government of a country. A federal government is formed when a group of political units, such as states or provinces join in a federation, delegating their individual sovereignty and many ...
does not grant individuals the right to file a lawsuit in the event of a data breach (only the Attorney General can file a lawsuit), but California law does.This means that California law sets a higher standard for medical privacy, and that individuals in California enjoy stronger legal protections and more ways to hold entities that violate their medical privacy accountable. * In the UK, the legal framework for how patient data is cared for and processed is the Data Protection Act 2018 (DPA), which incorporates the EU General Data Protection Regulation (GDPR) into law, and the common law duty of confidentiality (CLDC). The data protection legislation requires that the collection and processing of personal data be fair, lawful and transparent. This means that the collection and processing of data as defined by data protection legislation must always have a valid lawful basis and must also meet the requirements of the CLDC. *In the China, Article 18 of the "National Health Care Big Data Standards, Security and Services Management Measures (for Trial Implementation)" (National Health Planning and Development (2018) No. 23) promulgated by the National Health Care Commission in 2018 states, "The responsible unit shall adopt measures such as data classification, important data backup, and encryption authentication to guarantee the security of health care big data." However, the scope and definition of important data are not covered. Although the "Information Security Technology-Healthcare Data Security Guide" (the "Guide") issued by the National Standardization Committee also proposes that important data should be evaluated and approved in accordance with the regulations, there is likewise no definition of the connotation and definition of important data.


See also

* *
Medical Privacy Medical privacy or health privacy is the practice of maintaining the security and confidentiality of patient records. It involves both the conversational discretion of health care providers and the security of medical records. The terms can also ...
*
Data loss Data loss is an error condition in information systems in which information is destroyed by failures (like failed spindle motors or head crashes on hard drives) or neglect (like mishandling, careless handling or storage under unsuitable conditions ...


References


Further reading

* *


External links

* {{cite web , author=Office for Civil Rights , title=Breaches Affecting 500 or More Individuals , website=Breach Portal , publisher=U.S. Department of Health and Human Services , url=https://ocrportal.hhs.gov/ocr/breach/breach_report.jsf , access-date=17 June 2016 Data security Medical databases Data breaches