Glossary: Key Terms

Institutional Review Board at the Minnesota Department of Health

This glossary can help you understand the MDH IRB or as you submit an application. 

• Administrative Data Privacy Control: Examples include policies, procedures, training, and data minimization/retention protocols. 
• Data in human subjects research includes any identifiable private information or biospecimens collected from, or about, a living individual through interaction, intervention, or record review. 
• Data Privacy refers to the implementation of measures that guarantee the confidentiality, integrity, and availability of patient information. Data privacy entails protecting sensitive personal information, including medical records, personal identifiers, and other health-related data, from unauthorized access, misuse, or disclosure. 
• Data Security is the practice of safeguarding data throughout its lifecycle from theft, corruption, or unauthorized access using technologies like encryption, access controls, and policies to ensure its confidentiality, integrity, and availability. 
• Electronic Data Privacy Control: Examples include firewalls, encryption, VPNs, antivirus, access control lists.
• Human Subject means a living individual about whom an investigator is conducting research. 
• Human Subjects Research is research that:
  • (i) Obtains information or biospecimens through intervention or interaction with the individual, and uses, studies, or analyzes the information or biospecimens; or 
  • (ii) Obtains, uses, studies, analyzes, or generates identifiable private information or identifiable biospecimens. 
• Identifiable Private Information is private information for which the identity of the subject is/may readily be ascertained by the investigator or associated with the information.  
• Impaired Decision-Making Ability refers to a reduced ability to understand choices, weigh options, and foresee consequences. It's assessed by a patient's capacity to understand information, appreciate its relevance, reason through options, and communicate their choice.
• Minnesota Government Data Practices Act is a state law that controls how government data are collected, created, stored (maintained), used and released (disseminated). The MGDPA sets out certain requirements relating to the right of the public to access government data and the rights of individuals who are the subjects of government data.
• Non-research public health practice is to prevent or control disease or injury and improve health, or to improve a public health program or service.  
• Physical Data Privacy Control: Examples include locked rooms, surveillance (CCTV), key cards, and secure storage. 
• Primary Data is data collected directly by a researcher for an approved study. 
• Private Information is information which has been provided for specific purposes by an individual and that the individual can reasonably expect will not be made public. 
• Program Evaluation is the methodical analysis of a program’s implementation, effectiveness, attributions, contributions, and efficiencies. Evaluation aims to improve program processes, findings, and recommendations for decision making. 
• Public Health Practice (Non-research) refers to the prevention of disease or injury and the improvement of community health through such activities as disease surveillance, program evaluation, and outbreak investigation. 
• Public Health Surveillance refers to ongoing systematic activities, including collection, analysis , and interpretation of data essential to planning, implementing, and evaluating public health practices closely integrated to the dissemination of data to those who need to know and linked to prevention and control. Surveillance can be either research or non-research depending on the purpose. 
• Quality Improvement Activities work to increase the degree to which policies, programs, services, and research for the population increase desired health outcomes and conditions in which the population can be healthy. 
• Research is a systematic investigation, including research development, testing, and evaluation, designed to develop or contribute to generalizable knowledge. Essential characteristics of research include: living individuals, identifiable (in part) private health information, and involves voluntary research participants. 
• Secondary Data is pre-existing data collected by other parties for a different purpose.  
• Vulnerable Populations are groups with increased risk of health problems or exploitation due to factors like age, socioeconomic status, health conditions, or systemic disadvantages.