Medical record

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The terms medical record, health record and medical chart are used somewhat interchangeably to describe the systematic documentation of a single patient's medical history and care across time within one particular health care provider's jurisdiction. [1] A medical record includes a variety of types of "notes" entered over time by healthcare professionals, recording observations and administration of drugs and therapies, orders for the administration of drugs and therapies, test results, X-rays, reports, etc. The maintenance of complete and accurate medical records is a requirement of health care providers and is generally enforced as a licensing or certification prerequisite.

Contents

The terms are used for the written (paper notes), physical (image films) and digital records that exist for each individual patient and for the body of information found therein.

Medical records have traditionally been compiled and maintained by health care providers, but advances in online data storage have led to the development of personal health records (PHR) that are maintained by patients themselves, often on third-party websites. [2] This concept is supported by US national health administration entities [3] and by AHIMA, the American Health Information Management Association. [4]

A medical record folder being pulled from the records US Navy 041019-N-5821P-019 Airman Lauren Thurgood of Las Vegas, Nev., pulls patient medical records in the inpatient ward aboard the conventionally powered aircraft carrier USS Kitty Hawk.jpg
A medical record folder being pulled from the records

Because many consider the information in medical records to be sensitive private information covered by expectations of privacy, many ethical and legal issues are implicated in their maintenance, such as third-party access and appropriate storage and disposal. [5] Although the storage equipment for medical records generally is the property of the health care provider, the actual record is considered in most jurisdictions to be the property of the patient, who may obtain copies upon request. [6]

Uses

The information contained in the medical record allows health care providers to determine the patient's medical history and provide informed care. The medical record serves as the central repository for planning patient care and documenting communication among patient and health care provider and professionals contributing to the patient's care. An increasing purpose of the medical record is to ensure documentation of compliance with institutional, professional or governmental regulation.

The traditional medical record for inpatient care can include admission notes, on-service notes, progress notes (SOAP notes), preoperative notes, operative notes, postoperative notes, procedure notes, delivery notes, postpartum notes, and discharge notes.

Personal health records combine many of the above features with portability, thus allowing a patient to share medical records across providers and health care systems. [7]

Electronic medical records could also be studied to quantify disease burdens – such as the number of deaths from antimicrobial resistance [8] – or help identify causes of, factors of and contributors to diseases, [9] [10] especially when combined with genome-wide association studies. [11] [12] For such purposes, electronic medical records could potentially be made available in securely anonymized or pseudonymized [13] forms to ensure patients' privacy is maintained. [14] [12] [15] [16]

Contents

A patient's individual medical record identifies the patient and contains information regarding the patient's case history at a particular provider. The health record as well as any electronically stored variant of the traditional paper files contain proper identification of the patient. [17] Further information varies with the individual medical history of the patient.

The contents are generally written with other healthcare professionals in mind. This can result in confusion and hurt feelings when patients read these notes. [18] For example, some abbreviations, such as for shortness of breath, are similar to the abbreviations for profanities, and taking "time out" to follow a surgical safety protocol might be misunderstood as a disciplinary technique for children. [18]

Media applied

Traditionally, medical records were written on paper and maintained in folders often divided into sections for each type of note (progress note, order, test results), with new information added to each section chronologically. Active records are usually housed at the clinical site, but older records are often archived offsite.

The advent of electronic medical records has not only changed the format of medical records but has increased accessibility of files. The use of an individual dossier style medical record, where records are kept on each patient by name and illness type originated at the Mayo Clinic out of a desire to simplify patient tracking and to allow for medical research.[ citation needed ]

Maintenance of medical records requires security measures to prevent from unauthorized access or tampering with the records.[ citation needed ]

Medical history

The medical history is a longitudinal record of what has happened to the patient since birth. It chronicles diseases, major and minor illnesses, as well as growth landmarks. It gives the clinician a feel for what has happened before to the patient. As a result, it may often give clues to current disease state. It includes several subsets detailed below.

Surgical history
The surgical history is a chronicle of surgery performed for the patient. It may have dates of operations, operative reports, and/or the detailed narrative of what the surgeon did.
Obstetric history
The obstetric history lists prior pregnancies and their outcomes. It also includes any complications of these pregnancies.
Medications and medical allergies
The medical record may contain a summary of the patient's current and previous medications as well as any medical allergies.
Family history
The family history lists the health status of immediate family members as well as their causes of death (if known). [19] It may also list diseases common in the family or found only in one sex or the other. It may also include a pedigree chart. It is a valuable asset in predicting some outcomes for the patient.
Social history
The social history is a chronicle of human interactions. It tells of the relationships of the patient, his/her careers and trainings, and religious training. It is helpful for the physician to know what sorts of community support the patient might expect during a major illness. It may explain the behavior of the patient in relation to illness or loss. It may also give clues as to the cause of an illness (e.g. occupational exposure to asbestos).
Habits
Various habits which impact health, such as tobacco use, alcohol intake, exercise, and diet are chronicled, often as part of the social history. This section may also include more intimate details such as sexual habits and sexual orientation.
Immunization history
The history of vaccination is included. Any blood tests proving immunity will also be included in this section.
Growth chart and developmental history
For children and teenagers, charts documenting growth as it compares to other children of the same age is included, so that health-care providers can follow the child's growth over time. Many diseases and social stresses can affect growth, and longitudinal charting can thus provide a clue to underlying illness. Additionally, a child's behavior (such as timing of talking, walking, etc.) as it compares to other children of the same age is documented within the medical record for much the same reasons as growth.

Medical encounters

Within the medical record, individual medical encounters are marked by discrete summations of a patient's medical history by a physician, nurse practitioner, or physician assistant and can take several forms. Hospital admission documentation (i.e., when a patient requires hospitalization) or consultation by a specialist often take an exhaustive form, detailing the entirety of prior health and health care. Routine visits by a provider familiar to the patient, however, may take a shorter form such as the problem-oriented medical record (POMR), which includes a problem list of diagnoses or a "SOAP" method of documentation for each visit. Each encounter will generally contain the aspects below:

Chief complaint
This is the main problem (traditionally called a complaint) that has brought the patient to see the doctor or other clinician. Information on the nature and duration of the problem will be explored.
History of the present illness
A detailed exploration of the symptoms the patient is experiencing that have caused the patient to seek medical attention.
Physical examination
The physical examination is the recording of observations of the patient. This includes the vital signs, muscle power and examination of the different organ systems, especially ones that might directly be responsible for the symptoms the patient is experiencing.
Assessment and plan
The assessment is a written summation of what are the most likely causes of the patient's current set of symptoms. The plan documents the expected course of action to address the symptoms (diagnosis, treatment, etc.).

Orders and prescriptions

Written orders by medical providers are included in the medical record. These detail the instructions given to other members of the health care team by the primary providers.

Progress notes

When a patient is hospitalized, daily updates are entered into the medical record documenting clinical changes, new information, etc. These often take the form of a SOAP note and are entered by all members of the health-care team (doctors, nurses, physical therapists, dietitians, clinical pharmacists, respiratory therapists, etc.). They are kept in chronological order and document the sequence of events leading to the current state of health.

Test results

The results of testing, such as blood tests (e.g., complete blood count) radiology examinations (e.g., X-rays), pathology (e.g., biopsy results), or specialized testing (e.g., pulmonary function testing) are included. Often, as in the case of X-rays, a written report of the findings is included in lieu of the actual film.

Other information

Many other items are variably kept within the medical record. Digital images of the patient, flowsheets from operations/intensive care units, informed consent forms, EKG tracings, outputs from medical devices (such as pacemakers), chemotherapy protocols, and numerous other important pieces of information form part of the record depending on the patient and his or her set of illnesses/treatments.

Administrative issues

A ward clerk in the Menn Hospital, Colorado Ward clerk Menn Hospital La Junta CO (24648175876).jpg
A ward clerk in the Menn Hospital, Colorado

Medical records are legal documents that can be used as evidence via a subpoena duces tecum, [20] and are thus subject to the laws of the country/state in which they are produced. As such, there is great variability in rules governing production, ownership, accessibility, and destruction. There is some controversy regarding proof verifying the facts, or absence of facts in the record, apart from the medical record itself.[ citation needed ]

In 2009, Congress authorized and funded legislation known as the Health Information Technology for Economic and Clinical Health Act [21] to stimulate the conversion of paper medical records into electronic charts. While many hospitals and doctor's offices have since done this successfully, electronic health vendors' proprietary systems are sometimes incompatible. [22]

Demographics

Demographics include patient information that is not medical in nature. It is often information to locate the patient, including identifying numbers, addresses, and contact numbers. It may contain information about race and religion as well as workplace and type of occupation. It also contains information regarding the patient's health insurance. It is common to also find emergency contact information located in this section of the medical chart.

Production

In the United States, written records must be marked with the date and time and scribed with indelible pens without use of corrective paper. Errors in the record should be struck out with a single line (so that the initial entry remains legible) and initialed by the author. [20] Orders and notes must be signed by the author. Electronic versions require an electronic signature.

Ownership of patient's record

Ownership and keeping of patient's records varies from country to country.

US law and customs

In the United States, the data contained within the medical record belongs to the patient, whereas the physical form the data takes belongs to the entity responsible for maintaining the record [23] per the Health Insurance Portability and Accountability Act. [24] Patients have the right to ensure that the information contained in their record is accurate, and can petition their health care provider to amend factually incorrect information in their records. [20] [25]

There is no consensus regarding medical record ownership in the United States. Factors complicating questions of ownership include the form and source of the information, custody of the information, contract rights, and variation in state law. [26] There is no federal law regarding ownership of medical records. HIPAA gives patients the right to access and amend their own records, but it has no language regarding ownership of the records. [27] Twenty-eight states and Washington, D.C., have no laws that define ownership of medical records. Twenty-one states have laws stating that the providers are the owners of the records. Only one state, New Hampshire, has a law ascribing ownership of medical records to the patient. [28]

Canadian law and customs

Under Canadian federal law, the patient owns the information contained in a medical record, but the healthcare provider owns the records themselves. [29] The same is true for both nursing home and dental records. In cases where the provider is an employee of a clinic or hospital, it is the employer that has ownership of the records. By law, all providers must keep medical records for a period of 15 years beyond the last entry. [30]

The precedent for the law is the 1992 Canadian Supreme Court ruling in McInerney v MacDonald. In that ruling, an appeal by a physician, Dr. Elizabeth McInerney, challenging a patient's access to their own medical record was denied. The patient, Margaret MacDonald, won a court order granting her full access to her own medical record. [31] The case was complicated by the fact that the records were in electronic form and contained information supplied by other providers. McInerney maintained that she didn't have the right to release records she herself did not author. The courts ruled otherwise. Legislation followed, codifying into law the principles of the ruling. It is that legislation which deems providers the owner of medical records, but requires that access to the records be granted to the patient themselves. [32]

UK law and customs

In the United Kingdom, ownership of the NHS's medical records has in the past generally been described as belonging to the Secretary of State for Health [33] and this is taken by some to mean copyright also belongs to the authorities. [34]

German law and customs

In Germany, a relatively new law, [35] which has been established in 2013, strengthens the rights of patients. It states, amongst other things, the statutory duty of medical personnel to document the treatment of the patient in either hard copy or within the electronic patient record (EPR). This documentation must happen in a timely manner and encompass each and every form of treatment the patient receives, as well as other necessary information, such as the patient's case history, diagnoses, findings, treatment results, therapies and their effects, surgical interventions and their effects, as well as informed consents. The information must include virtually everything that is of functional importance for the actual, but also for future treatment. This documentation must also include the medical report and must be archived by the attending physician for at least 10 years. The law clearly states that these records are not only memory aids for the physicians, but also should be kept for the patient and must be presented on request.

In addition, an electronic health insurance card was issued in January 2014 which is applicable in Germany (Elektronische Gesundheitskarte or eGK), but also in the other member states of the European Union (European Health Insurance Card). It contains data such as: the name of the health insurance company, the validity period of the card, and personal information about the patient (name, date of birth, sex, address, health insurance number) as well information about the patient's insurance status and additional charges. Furthermore, it can contain medical data if agreed to by the patient. This data can include information concerning emergency care, prescriptions, an electronic medical record, and electronic physician's letters. However, due to the limited storage space (32kB), some information is deposited on servers.

Accessibility

United States

In the United States, the most basic rules governing access to a medical record dictate that only the patient and the health-care providers directly involved in delivering care have the right to view the record. The patient, however, may grant consent for any person or entity to evaluate the record. The full rules regarding access and security for medical records are set forth under the guidelines of the Health Insurance Portability and Accountability Act (HIPAA). The rules become more complicated in special situations. A 2018 study found discrepancies in how major hospitals handle record requests, with forms displaying limited information relative to phone conversations. [36]

Capacity
When a patient does not have capacity (is not legally able) to make decisions regarding his or her own care, a legal guardian is designated (either through next of kin or by action of a court of law if no kin exists). Legal guardians have the ability to access the medical record in order to make medical decisions on the patient’s behalf. Those without capacity include the comatose, minors (unless emancipated), and patients with incapacitating psychiatric illness or intoxication.
Medical emergency
In the event of a medical emergency involving a non-communicative patient, consent to access medical records is assumed unless written documentation has been previously drafted (such as an advance directive)
Research, auditing, and evaluation
Individuals involved in medical research, financial or management audits, or program evaluation have access to the medical record. They are not allowed access to any identifying information, however.
Risk of death or harm
Information within the record can be shared with authorities without permission when failure to do so would result in death or harm, either to the patient or to others. Information cannot be used, however, to initiate or substantiate a charge unless the previous criteria are met (i.e., information from illicit drug testing cannot be used to bring charges of possession against a patient). This rule was established in the United States Supreme Court case Jaffe v. Redmond .

Canada

In the 1992 Canadian Supreme Court ruling in McInerney v. MacDonald gave patients the right to copy and examine all information in their medical records, while the records themselves remained the property of the healthcare provider. [31] The 2004 Personal Health Information Protection Act (PHIPA) contains regulatory guidelines to protect the confidentiality of patient information for healthcare organizations acting as stewards of their medical records. [37] Despite legal precedent for access nationwide, there is still some variance in laws depending on the province. There is also some confusion among providers as to the scope of the patient information they have to give access to, but the language in the supreme court ruling gives patient access rights to their entire record. [38]

United Kingdom

In the United Kingdom, the Data Protection Acts and later the Freedom of Information Act 2000 gave patients or their representatives the right to a copy of their record, except where information breaches confidentiality (e.g., information from another family member or where a patient has asked for information not to be disclosed to third parties) or would be harmful to the patient's wellbeing (e.g., some psychiatric assessments). Also, the legislation gives patients the right to check for any errors in their record and insist that amendments be made if required.

Destruction

In general, entities in possession of medical records are required to maintain those records for a given period. In the United Kingdom, medical records are required for the lifetime of a patient and legally for as long as that complaint action can be brought. Generally in the UK, any recorded information should be kept legally for 7 years, but for medical records additional time must be allowed for any child to reach the age of responsibility (20 years). Medical records are required many years after a patient's death to investigate illnesses within a community (e.g., industrial or environmental disease or even deaths at the hands of doctors committing murders, as in the Harold Shipman case). [39]

Abuses

The standard of care in the case of intersex condition was to lie to the patient. Licence to Lie.jpg
The standard of care in the case of intersex condition was to lie to the patient.

The outsourcing of medical record transcription and storage has the potential to violate patient–physician confidentiality by possibly allowing unaccountable persons access to patient data. With the increase of clinical notes being shared as a result of the 21st Century Cures Act, the increase in sensitive terms used in the records of all patients, including minors, are increasingly shared amongst care teams making privacy more complicated. [40] Intersex people have historically had their medical records intentionally falsified/concealed, to hide birth sex, and intersex medical procedures. Christiane Völling became the first intersex person in Europe to successfully sue for medical malpractice. [41]

Falsification of a medical record by a medical professional is a felony in most United States jurisdictions. Governments have often refused to disclose medical records of military personnel who have been used as experimental subjects.

Data breaches

Given the series of medical data breaches and the lack of public trust, some countries have enacted laws requiring safeguards to be put in place to protect the security and confidentiality of medical information as it is shared electronically and to give patients some important rights to monitor their medical records and receive notification for loss and unauthorized acquisition of health information. The United States and the EU have imposed mandatory medical data breach notifications. [42]

Patients' medical information can be shared by a number of people both within the health care industry and beyond. The Health Insurance Portability and Accessibility Act (HIPAA) is a United States federal law pertaining to medical privacy that went into effect in 2003. This law established standards for patient privacy in all 50 states, including the right of patients to access to their own records. HIPAA provides some protection, but does not resolve the issues involving medical records privacy. [43]

Medical and health care providers experienced 767 security breaches resulting in the compromised confidential health information of 23,625,933 patients during the period of 2006–2012. [44]

Privacy

The federal Health Insurance Portability and Accessibility Act (HIPAA) addresses the issue of privacy by providing medical information handling guidelines. [45] Not only is it bound by the Code of Ethics of its profession (in the case of doctors and nurses), but also by the legislation on data protection and criminal law. Professional secrecy applies to practitioners, psychologists, nursing, physiotherapists, occupational therapists, nursing assistants, chiropodists, and administrative personnel, as well as auxiliary hospital staff. The maintenance of the confidentiality and privacy of patients implies first of all in the medical history, which must be adequately guarded, remaining accessible only to the authorized personnel. However, the precepts of privacy must be observed in all fields of hospital life: privacy at the time of the conduct of the anamnesis and physical exploration, the privacy at the time of the information to the relatives, the conversations between healthcare providers in the corridors, maintenance of adequate patient data collection in hospital nursing controls (planks, slates), telephone conversations, open intercoms etc.

See also

Related Research Articles

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 refer to the physical privacy of patients from other patients and providers while in a medical facility, and to modesty in medical settings. Modern concerns include the degree of disclosure to insurance companies, employers, and other third parties. The advent of electronic medical records (EMR) and patient care management systems (PCMS) have raised new concerns about privacy, balanced with efforts to reduce duplication of services and medical errors.

<span class="mw-page-title-main">Health Insurance Portability and Accountability Act</span> United States federal law concerning health information

The Health Insurance Portability and Accountability Act of 1996 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, 1996. It aimed to alter the transfer of healthcare information, stipulated the guidelines by which personally identifiable information maintained by the healthcare and healthcare insurance industries should be protected from fraud and theft, and addressed some limitations on healthcare insurance coverage. It generally prohibits healthcare providers and businesses called covered entities from disclosing protected information to anyone other than a patient and the patient's authorized representatives without their consent. The bill does not restrict patients from receiving information about themselves. Furthermore, it does not prohibit patients from voluntarily sharing their health information however they choose, nor does it require confidentiality where a patient discloses medical information to family members, friends or other individuals not employees of a covered entity.

<span class="mw-page-title-main">Electronic health record</span> Digital collection of patient and population electronically stored health information

An electronic health record (EHR) is the systematized collection of patient and population electronically stored health information in a digital format. These records can be shared across different health care settings. Records are shared through network-connected, enterprise-wide information systems or other information networks and exchanges. EHRs may include a range of data, including demographics, medical history, medication and allergies, immunization status, laboratory test results, radiology images, vital signs, personal statistics like age and weight, and billing information.

A personal health record (PHR) is a health record where health data and other information related to the care of a patient is maintained by the patient. This stands in contrast to the more widely used electronic medical record, which is operated by institutions and contains data entered by clinicians to support insurance claims. The intention of a PHR is to provide a complete and accurate summary of an individual's medical history which is accessible online. The health data on a PHR might include patient-reported outcome data, lab results, and data from devices such as wireless electronic weighing scales or from a smartphone.

Health technology is defined by the World Health Organization as the "application of organized knowledge and skills in the form of devices, medicines, vaccines, procedures, and systems developed to solve a health problem and improve quality of lives". This includes pharmaceuticals, devices, procedures, and organizational systems used in the healthcare industry, as well as computer-supported information systems. In the United States, these technologies involve standardized physical objects, as well as traditional and designed social means and methods to treat or care for patients.

Health information exchange (HIE) is the mobilization of health care information electronically across organizations within a region, community or hospital system. Participants in data exchange are called in the aggregate Health Information Networks (HIN). In practice, the term HIE may also refer to the health information organization (HIO) that facilitates the exchange.

Protected health information (PHI) under U.S. law is any information about health status, provision of health care, or payment for health care that is created or collected by a Covered Entity, and can be linked to a specific individual. This is interpreted rather broadly and includes any part of a patient's medical record or payment history.

Patient portals are healthcare-related online applications that allow patients to interact and communicate with their healthcare providers, such as physicians and hospitals. Typically, portal services are available on the Internet at all hours of the day and night. Some patient portal applications exist as stand-alone web sites and sell their services to healthcare providers. Other portal applications are integrated into the existing web site of a healthcare provider. Still others are modules added onto an existing electronic medical record (EMR) system. What all of these services share is the ability of patients to interact with their medical information via the Internet. Currently, the lines between an EMR, a personal health record, and a patient portal are blurring. For example, Intuit Health and Microsoft HealthVault describe themselves as personal health records (PHRs), but they can interface with EMRs and communicate through the Continuity of Care Record standard, displaying patient data on the Internet so it can be viewed through a patient portal.

<span class="mw-page-title-main">De-identification</span> Preventing personal identity from being revealed

De-identification is the process used to prevent someone's personal identity from being revealed. For example, data produced during human subject research might be de-identified to preserve the privacy of research participants. Biological data may be de-identified in order to comply with HIPAA regulations that define and stipulate patient privacy laws.

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 and Human Services resolved to spend $25.9 billion to promote and expand the adoption of health information technology. The Washington Post reported the inclusion of "as much as $36.5 billion in spending to create a nationwide network of electronic health records." At the time it was enacted, it was considered "the most important piece of health care legislation to be passed in the last 20 to 30 years" and the "foundation for health care reform."

A medical scribe is an allied health paraprofessional who specializes in charting physician-patient encounters in real time, such as during medical examinations. They also locate information and patients for physicians and complete forms needed for patient care. Depending on which area of practice the scribe works in, the position may also be called clinical scribe, ER scribe or ED scribe, or just scribe. A scribe is trained in health information management and the use of health information technology to support it. A scribe can work on-site or remotely from a HIPAA-secure facility. Medical scribes who work at an off-site location are known as virtual medical scribes.

Digital health is a discipline that includes digital care programs, technologies with health, healthcare, living, and society to enhance the efficiency of healthcare delivery and to make medicine more personalized and precise. It uses information and communication technologies to facilitate understanding of health problems and challenges faced by people receiving medical treatment and social prescribing in more personalised and precise ways. The definitions of digital health and its remits overlap in many ways with those of health and medical informatics.

In Electronic Health Records (EHR's) data masking, or controlled access, is the process of concealing patient health data from certain healthcare providers. Patients have the right to request the masking of their personal information, making it inaccessible to any physician, or a particular physician, unless a specific reason is provided. Data masking is also performed by healthcare agencies to restrict the amount of information that can be accessed by external bodies such as researchers, health insurance agencies and unauthorised individuals. It is a method used to protect patients’ sensitive information so that privacy and confidentiality are less of a concern. Techniques used to alter information within a patient's EHR include data encryption, obfuscation, hashing, exclusion and perturbation.

<span class="mw-page-title-main">Health information on the Internet</span>

Health information on the Internet refers to all health-related information communicated through or available on the Internet.

Health care analytics is the health care analysis activities that can be undertaken as a result of data collected from four areas within healthcare; claims and cost data, pharmaceutical and research and development (R&D) data, clinical data, and patient behavior and sentiment data (patient behaviors and preferences,. Health care analytics is a growing industry in the United States, expected to grow to more than $31 billion by 2022. The industry focuses on the areas of clinical analysis, financial analysis, supply chain analysis, as well as marketing, fraud and HR analysis.

Medical data, including patients' identity information, health status, disease diagnosis and treatment, and biogenetic 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 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.

Data re-identification or de-anonymization is the practice of matching anonymous data with publicly available information, or auxiliary data, in order to discover the person the data belong to. This is a concern because companies with privacy policies, health care providers, and financial institutions may release the data they collect after the data has gone through the de-identification process.

Privacy in education refers to the broad area of ideologies, practices, and legislation that involve the privacy rights of individuals in the education system. Concepts that are commonly associated with privacy in education include the expectation of privacy, the Family Educational Rights and Privacy Act (FERPA), the Fourth Amendment, and the Health Insurance Portability and Accountability Act of 1996 (HIPAA). Most privacy in education concerns relate to the protection of student data and the privacy of medical records. Many scholars are engaging in an academic discussion that covers the scope of students’ privacy rights, from student in K-12 and even higher education, and the management of student data in an age of rapid access and dissemination of information.

Health data is any data "related to health conditions, reproductive outcomes, causes of death, and quality of life" for an individual or population. Health data includes clinical metrics along with environmental, socioeconomic, and behavioral information pertinent to health and wellness. A plurality of health data are collected and used when individuals interact with health care systems. This data, collected by health care providers, typically includes a record of services received, conditions of those services, and clinical outcomes or information concerning those services. Historically, most health data has been sourced from this framework. The advent of eHealth and advances in health information technology, however, have expanded the collection and use of health data—but have also engendered new security, privacy, and ethical concerns. The increasing collection and use of health data by patients is a major component of digital health.

Federal and state governments, insurance companies and other large medical institutions are heavily promoting the adoption of electronic health records. The US Congress included a formula of both incentives and penalties for EMR/EHR adoption versus continued use of paper records as part of the Health Information Technology for Economic and Clinical Health (HITECH) Act, enacted as part of the, American Recovery and Reinvestment Act of 2009.

References

  1. ↑ "Personal Health Records" (PDF). CMS. April 2011. Archived from the original (PDF) on 2012-03-05. Retrieved 2012-04-14.
  2. ↑ "Frequently Asked Questions". MyPHR.com. Archived from the original on 2012-04-11. Retrieved 2012-04-14.
  3. ↑ "National Institute for Health". Nih.gov. Retrieved 2012-04-14.
  4. ↑ "American Health Information Management Association". Ahima.org. 2012-03-22. Retrieved 2012-04-14.
  5. ↑ "Health Information Privacy". Hhs.gov. Retrieved 2012-04-14.
  6. ↑ "10 tips to give patients electronic access to their medical records". American Medical Association. 9 March 2020.
  7. ↑ "Medical Records". McKinley Health Center. Retrieved 2012-04-14.
  8. ↑ Christopher JL Murray; et al. (12 February 2022). "Global burden of bacterial antimicrobial resistance in 2019: a systematic analysis". The Lancet. 399 (10325): 629–655. doi:10.1016/S0140-6736(21)02724-0. ISSN   0140-6736. PMC   8841637 . PMID   35065702.
  9. ↑ Solomon, Daniel H.; Liu, Chih-Chin; Kuo, I.-Hsin; Zak, Agnes; Kim, Seoyoung C. (1 September 2016). "Effects of colchicine on risk of cardiovascular events and mortality among patients with gout: a cohort study using electronic medical records linked with Medicare claims". Annals of the Rheumatic Diseases. 75 (9): 1674–1679. doi:10.1136/annrheumdis-2015-207984. ISSN   0003-4967. PMC   5049504 . PMID   26582823.
  10. ↑ Newschaffer, Craig J.; Bush, Trudy L.; Penberthy, Lynne T. (1 June 1997). "Comorbidity measurement in elderly female breast cancer patients with administrative and medical records data". Journal of Clinical Epidemiology. 50 (6): 725–733. doi:10.1016/S0895-4356(97)00050-4. ISSN   0895-4356. PMID   9250271.
  11. ↑ Byun, Jinyoung; Schwartz, Ann G; Lusk, Christine; Wenzlaff, Angela S; de Andrade, Mariza; Mandal, Diptasri; Gaba, Colette; Yang, Ping; You, Ming; Kupert, Elena Y; Anderson, Marshall W; Han, Younghun; Li, Yafang; Qian, David; Stilp, Adrienne; Laurie, Cathy; Nelson, Sarah; Zheng, Wenying; Hung, Rayjean J; Gaborieau, Valerie; Mckay, James; Brennan, Paul; Caporaso, Neil E; Landi, Maria Teresa; Wu, Xifeng; McLaughlin, John R; Brhane, Yonathan; Bossé, Yohan; Pinney, Susan M; Bailey-Wilson, Joan E; Amos, Christopher I (21 September 2018). "Genome-wide association study of familial lung cancer". Carcinogenesis. 39 (9): 1135–1140. doi:10.1093/carcin/bgy080. PMC   6148967 . PMID   29924316.
  12. 1 2 Loukides, Grigorios; Gkoulalas-Divanis, Aris; Malin, Bradley (27 April 2010). "Anonymization of electronic medical records for validating genome-wide association studies". Proceedings of the National Academy of Sciences. 107 (17): 7898–7903. Bibcode:2010PNAS..107.7898L. doi: 10.1073/pnas.0911686107 . ISSN   0027-8424. PMC   2867915 . PMID   20385806.
  13. ↑ Al-Zubaidie, Mishall; Zhang, Zhongwei; Zhang, Ji (January 2019). "PAX: Using Pseudonymization and Anonymization to Protect Patients' Identities and Data in the Healthcare System". International Journal of Environmental Research and Public Health. 16 (9): 1490. doi: 10.3390/ijerph16091490 . ISSN   1660-4601. PMC   6540163 . PMID   31035551.
  14. ↑ Tamersoy, Acar; Loukides, Grigorios; Nergiz, Mehmet Ercan; Saygin, Yucel; Malin, Bradley (May 2012). "Anonymization of Longitudinal Electronic Medical Records". IEEE Transactions on Information Technology in Biomedicine. 16 (3): 413–423. doi:10.1109/TITB.2012.2185850. ISSN   1558-0032. PMC   3779068 . PMID   22287248.
  15. ↑ Chevrier, Raphaël; Foufi, Vasiliki; Gaudet-Blavignac, Christophe; Robert, Arnaud; Lovis, Christian (31 May 2019). "Use and Understanding of Anonymization and De-Identification in the Biomedical Literature: Scoping Review". Journal of Medical Internet Research. 21 (5): e13484. doi: 10.2196/13484 . PMC   6658290 . PMID   31152528.
  16. ↑ Puri, Vartika; Sachdeva, Shelly; Kaur, Parmeet (1 May 2019). "Privacy preserving publication of relational and transaction data: Survey on the anonymization of patient data". Computer Science Review. 32: 45–61. doi:10.1016/j.cosrev.2019.02.001. ISSN   1574-0137. S2CID   133142770.
  17. ↑ "A Sample Health Record". Nlm.nih.gov. Retrieved 2012-04-14.
  18. 1 2 Klein, Jared W.; Jackson, Sara L.; Bell, Sigall K.; Anselmo, Melissa K.; Walker, Jan; Delbanco, Tom; Elmore, Joann G. (October 2016). "Your Patient Is Now Reading Your Note: Opportunities, Problems, and Prospects". The American Journal of Medicine. 129 (10): 1018–1021. doi:10.1016/j.amjmed.2016.05.015. ISSN   0002-9343. PMC   7098183 . PMID   27288854.
  19. ↑ "My Family Health Portrait". Office of the Surgeon General. Archived from the original on 2014-10-06. Retrieved 2012-04-14.
  20. 1 2 3 Judson, Karen, B.S.; Harrison, Carlene, Ed.D., C.M.A. (2010). "Chapter 6: Medical Records and Informed Consent". Law & Ethics for Medical Careers (5th ed.). New York: McGraw-Hill Higher Education. ISBN   9780073402062.{{cite book}}: CS1 maint: multiple names: authors list (link)
  21. ↑ "HITECH Act Enforcement Interim Final Rule". Hhs.gov. 28 October 2009. Retrieved 2018-09-25.
  22. ↑ "Paper Trails: Living and Dying With Fragmented Medical Records". undark.org. 24 September 2018. Retrieved 2018-09-25.
  23. ↑ Brodnik, Melanie S., PhD, RHIA; McCain, Mary Cole, MPA, RHIA; et al. (2009). Fundamentals of Law for Health Informatics and Information Management. Chicago: AHIMA. p. 239. ISBN   978-1-58426-173-5.{{cite book}}: CS1 maint: multiple names: authors list (link)
  24. ↑ "P.L. 104-191". Aspe.hhs.gov. 1996-08-21. Retrieved 2012-04-14.
  25. ↑ 45 CFR 164.526
  26. ↑ "Who Owns Health Information? - Health Information & the Law".
  27. ↑ "Patient records: The struggle for ownership". Archived from the original on 2015-12-10.
  28. ↑ "Who Owns Medical Records: 50 State Comparison - Health Information & the Law".
  29. ↑ "CMPA: Electronic Records Handbook" (PDF).
  30. ↑ The Canadian Bar Association: Getting Your Medical Records
  31. 1 2 Canada. Supreme, Court (1992). "McInerney v. MacDonald". Dominion Law Reports. 93: 415–31. PMID   12041089.
  32. ↑ "CMPA: Who Owns the Medical Record?".
  33. ↑ Moyle R (30 November 1976). "Written Answers (Commons): SOCIAL SERVICES: Medical Records (Ownership and Storage)". Hansard . 921 (c91W). Personal medical records, including X-rays, in respect of patients treated under the NHS are held to be the property of the Secretary of State. NHS hospital medical records are stored in premises designated by the appropriate health authority. Access to a patient's medical records is governed in the patient's interest by the ethics of the medical and allied professions.
  34. ↑ "Policy and Procedure For Records: Retention & Disposal" (PDF). Mersey Care NHS Trust. Nov 2016. Retrieved 2017-10-16. ownership and copyright in these records as a rule is with the NHS Trust or Health Authority, not with any individual employee or contractor.
  35. ↑ "§ 630f BGB - Dokumentation der Behandlung". dejure.org. Retrieved 2022-04-05.
  36. ↑ Lye, Carolyn T.; Forman, Howard P.; Gao, Ruiyi; Daniel, Jodi G.; Hsiao, Allen L.; Mann, Marilyn K.; deBronkart, Dave; Campos, Hugo O.; Krumholz, Harlan M. (2018-10-05). "Assessment of US Hospital Compliance With Regulations for Patients' Requests for Medical Records". JAMA Network Open. 1 (6): e183014. doi:10.1001/jamanetworkopen.2018.3014. ISSN   2574-3805. PMC   6324595 . PMID   30646219.
  37. ↑ "Personal Health Information Protection Acts [SBC 2003] Chapter 63".
  38. ↑ Grant, D.A. (1998). "MDs still confused about patient access to medical records". Canadian Medical Association Journal. 158 (9): 1126. PMC   1229252 .
  39. ↑ "Government 'Breached Ex-Soldier's Human Rights'". The Guardian. October 20, 2004.
  40. ↑ Lee, Jennifer; Yang, Samuel; Holland-Hall, Cynthia; Sezgin, Emre; Gill, Manjot; Linwood, Simon; Huang, Yungui; Hoffman, Jeffrey (2022-06-10). "Prevalence of Sensitive Terms in Clinical Notes Using Natural Language Processing Techniques: Observational Study". JMIR Medical Informatics. 10 (6): e38482. doi: 10.2196/38482 . ISSN   2291-9694. PMC   9233261 . PMID   35687381.
  41. ↑ Dreger, Alice D.; Herndon, April M. (2009-04-01). "Progress and Politics in the Intersex Rights Movement" . GLQ: A Journal of Lesbian and Gay Studies. 15 (2): 199–224. doi:10.1215/10642684-2008-134. ISSN   1064-2684. S2CID   145754009.
  42. ↑ Kierkegaard Patrick (2012). "Medical data breaches: Notification delayed is notification denied". Computer Law & Security Review. 28 (2): 163–183. doi:10.1016/j.clsr.2012.01.003.
  43. ↑ Privacy Rights Clearinghouse - Medical Privacy Information
  44. ↑ Privacy Rights Clearinghouse's Chronology of Data Security Breaches.
  45. ↑ Health and Human Services HIPAA Privacy Rule for health information.

Organizations dealing with medical records

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