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Suggested Citation:"Glossary." Institute of Medicine. 1994. Health Data in the Information Age: Use, Disclosure, and Privacy. Washington, DC: The National Academies Press. doi: 10.17226/2312.
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Glossary


Access control

Information use policy to determine who can have access to what data (both organization personnel and persons external to the organization) and policies and procedures preventing access by those who are not authorized to have it.

Accuracy

Magnitude of errors in data resulting from miscoding or misrepresenting facts, maintaining out-of-date findings, or commingling of data from more than one person.


Comprehensiveness

Completeness of records in patient care events. Amount of information one has on an individual in the population both for each patient encounter with the health care system and for all of a patient's encounters over time.

Computer-based patient record See Patient record, computer-based.

Connectivity

The potential of the (computer-based) record or record system to establish links to or interact effectively with any sort of provider or database (IOM, 1991a).


Database

A collection of data in a computer, organized so that it can be expanded, updated, and retrieved rapidly for various uses.

Data confidentiality

Status accorded to data or information indicating that it must be protected. Protection includes maintaining the integrity of the data and access control.

Data-exchange standards

Standards that govern the collection, aggrega-

Suggested Citation:"Glossary." Institute of Medicine. 1994. Health Data in the Information Age: Use, Disclosure, and Privacy. Washington, DC: The National Academies Press. doi: 10.17226/2312.
×

tion, transmission, dissemination, and exchange of health data (across disparate systems) and that foster the use of more consistent medical vocabulary (IOM, 1991a).

Data integrity

Quality or state of being unimpaired such that data are not altered or destroyed accidentally or intentionally.

Data linkage

  Bringing together two separately recorded pieces of information concerning a particular individual, family, provider, facility, or other record subject.

Data network See Network, data.

Data reliability

A measure of the consistency of data items based on their reproducibility and an estimation of their error of measurement.

Data reuse

Use of data that have been gathered for another purpose (such as patient care, billing, or research) and that are employed for purposes for which they were not necessarily intended but which may generate new knowledge.

Data security

Protection of data, especially sensitive data, from accidental or intentional disclosure to unauthorized persons and from unauthorized alteration by techniques such as software and hardware protections, physical measures, and informed, alert staff. (See also Data confidentiality.)

Disclosure, public

Communication, or publication and dissemination, of certain kinds of information to the public at large.


Feedback

Making available to providers and practitioners the data for or results of evaluative studies about themselves and their peers.


Generalizability

The proposition that information on one dimension of health care delivery and performance will in some fashion predict or otherwise relate to other dimensions of performance.

Global index

A composite score intended to represent the performance of an entire hospital, plan, or individual provider. 


Health database organization

The administrative and operational structure for regional health databases. A data organization that has as its mission the public release of data and results of analyses done on the databases under its control. It (1) operates under a common authority; (2) obtains health-related information from a wide variety of sources and puts databases to multiple uses; (3) contains person-identifiable data; (4) serves a specific, defined geographic area; (5) has inclusive population files; (6) has comprehensive data; (7) manipulates data electronically; and (8) supports electronic access.

Health status

Information typically from individuals themselves, on domains of health such as physical functioning, mental and emotional

Suggested Citation:"Glossary." Institute of Medicine. 1994. Health Data in the Information Age: Use, Disclosure, and Privacy. Washington, DC: The National Academies Press. doi: 10.17226/2312.
×

well-being, cognitive functioning, social and role functioning, and perceptions of one's health in the past, now, and for the future and/or compared with that of one's peers (also called health-related quality of life).


Inclusiveness

The extent to which entire populations or defined groups are intentionally included in a database.


Longitudinal record of care

All the care provided for a discrete course of illness or injury, regardless of site or setting.


Network, data  

A set of databases that are hosted on several computer systems interconnected with one another and to terminals and that serve some community of users. Such a network will typically have the following attributes: (1) The databases are dispersed over several machines; each one or group resides on one or more computer systems. (2) The computer systems are often, but not necessarily, physically distant from one another. (3) All the machines in the network are linked by some means so that information can be transmitted from one machine to another. (4) Each machine has software to permit exchange of information among individual systems in the network, and in turn to allow individual users of the network to query the many databases and to receive, analyze, and aggregate data from them.


Outcomes

What happens to a person as a result of health care. Outcomes include measures of the individual's health status and quality of life (or health-related quality of life), as well as numerous other measures such as presence or absence of disease, readmission to hospital, repeat surgery, and death (USDHHS, 1991).


Patient record, computer-based

An electronic patient record that resides in a system specifically designed to support users by providing accessibility to complete and accurate data, alerts, reminders, clinical decision support systems, links to medical knowledge, and other aids (IOM, 1991a).

Patient record, primary

That health care/medical record used by health care professionals while providing patient care services to review patient data or document their own observations, actions, or instructions (Ball and Collen, 1992).

Patient record, secondary 

  Patient-identifiable data taken from the primary patient record to satisfy the needs of specific users (Ball and Collen, 1992).

Person-identifiable

Any information that could be uniquely associated

Suggested Citation:"Glossary." Institute of Medicine. 1994. Health Data in the Information Age: Use, Disclosure, and Privacy. Washington, DC: The National Academies Press. doi: 10.17226/2312.
×

with the individual to whom it pertains; such inferential identification is greatly enhanced by computer cross-matching. Person is not intended to include physicians or other individual caregivers in their caregiver roles. (See also Person-identified.)

Person-identified

Information that definitely or probably refers to specific persons. Person-identified information is associated with names, Social Security numbers, alphanumeric codes, or other unique (or nearly unique) information assigned to an individual. Person is not intended to include physicians or other individual caregivers in their caregiver roles. (See also Person-identifiable.)

Personal identification code

A short code entered by a patient, probably on a keypad, at the time of health care services that permits access to his or her database.

Primary data

See under Data, primary.

Primary patient record

See under Patient record, primary.

Privacy

The right of the individual to be left alone, to withdraw from the influence of his environment, to be secluded, not annoyed, and not intruded upon by extension of the right to be protected against physical or psychological invasion or against the misuse or abuse of something legally owned by an individual or normally considered by society to be his or her property (Westin, 1976). (See also Privacy, information.)

Privacy, information

The interest of an individual to control the dissemination and use of information that relates to himself or herself or to have information about oneself be inaccessible to others. 


Quality assessment

Measurement of technical and interpersonal aspects of health care, including access to and outcomes of that care.

Quality assurance

A cycle of activities and systems for maintaining the quality of patient care. Programs of quality assurance can be internal or external to an organization.

Quality improvement

Efforts to improve the level of performance of a key process, which involves measuring the level of current performance, finding ways to improve that performance, and implementing new and better methods.


Reliability

See Data reliability.


Secondary data

See Data, secondary.

Secondary patient record

See Patient record, secondary.

Security

See Data security, System security.

System security 

Protection from unauthorized access, including provisions for hardware, software, communications, and system users, and use determinations based on organizational computer security programs

Suggested Citation:"Glossary." Institute of Medicine. 1994. Health Data in the Information Age: Use, Disclosure, and Privacy. Washington, DC: The National Academies Press. doi: 10.17226/2312.
×

(Martin, 1983). Also, the measures taken to keep computer-based information systems safe from unauthorized access and other harm (IOM, 1991a). 


Third-party payers

Companies that administer health benefit plans, maintain records of eligibility and payment, adjudicate, and pay claims. The first and second parties are the patient and the provider (clinician or institution). (When the health plan is administered by the company, they are called third-party administrators.)


Unique identifier

A code (usually numeric or alphanumeric) that refers to one, and only one, person at any one time, does not change for that person over time, and permits positive (or probable) identification of that individual. The term may apply to codes assigned to data subjects and to practitioners. (See also Universal identifier.)

Universal identifier

A single code used in all health databases to refer to an individual. Such a code would allow linkage among health databases. (See Data linkage.)


Validity

The extent to which data correspond to the actual state of affairs or an instrument that measures what it purports to measure.


Internal validity

The degree to which one can support a causal relationship between treatment and outcome, given the way they are measured by the data.


Construct validity

The degree to which one can generalize from one analysis to broader theories or models.


External validity

The degree to which one can generalize from a finding (of causal relationship) to alternative measures of the treatment and outcome and across different types of individuals, sites of care, and times. (See also Generalizability.)

Suggested Citation:"Glossary." Institute of Medicine. 1994. Health Data in the Information Age: Use, Disclosure, and Privacy. Washington, DC: The National Academies Press. doi: 10.17226/2312.
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Page 239
Suggested Citation:"Glossary." Institute of Medicine. 1994. Health Data in the Information Age: Use, Disclosure, and Privacy. Washington, DC: The National Academies Press. doi: 10.17226/2312.
×
Page 240
Suggested Citation:"Glossary." Institute of Medicine. 1994. Health Data in the Information Age: Use, Disclosure, and Privacy. Washington, DC: The National Academies Press. doi: 10.17226/2312.
×
Page 241
Suggested Citation:"Glossary." Institute of Medicine. 1994. Health Data in the Information Age: Use, Disclosure, and Privacy. Washington, DC: The National Academies Press. doi: 10.17226/2312.
×
Page 242
Suggested Citation:"Glossary." Institute of Medicine. 1994. Health Data in the Information Age: Use, Disclosure, and Privacy. Washington, DC: The National Academies Press. doi: 10.17226/2312.
×
Page 243
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Health Data in the Information Age: Use, Disclosure, and Privacy Get This Book
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Regional health care databases are being established around the country with the goal of providing timely and useful information to policymakers, physicians, and patients. But their emergence is raising important and sometimes controversial questions about the collection, quality, and appropriate use of health care data.

Based on experience with databases now in operation and in development, Health Data in the Information Age provides a clear set of guidelines and principles for exploiting the potential benefits of aggregated health data--without jeopardizing confidentiality.

A panel of experts identifies characteristics of emerging health database organizations (HDOs). The committee explores how HDOs can maintain the quality of their data, what policies and practices they should adopt, how they can prepare for linkages with computer-based patient records, and how diverse groups from researchers to health care administrators might use aggregated data.

Health Data in the Information Age offers frank analysis and guidelines that will be invaluable to anyone interested in the operation of health care databases.

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