A Community Member's Guide to Community Engaged Research: Glossary of Terms

This guide is an introduction to CEnR for community members and organizations and includes definitions, how-to guides, funding sources, as well as recommended reading and a useful glossary of terms.

Glossary of Terms for CEnR/CBPR

Academic-Community partnership: A partnership that enables communities and academic institutions to engage in partnerships that balance power, share resources, and work toward systems change for the individuals and institutions involved.

Biobank: A large collection of biological or medical data and tissue samples, amassed for research purposes.

Biospecimens: A biological laboratory specimen held by a biorepository for research. 

Clinical Research: A branch of healthcare science that determines the safety and effectiveness (efficacy) of medications, devices, diagnostic products and treatment regimens intended for human use. 

Clinical trial: A research study in which one or more human subjects are prospectively assigned to one or more interventions (which may include placebo or other control) to evaluate the effects of those interventions on health-related biomedical or behavioral outcomes. The action of working with someone to produce or create something.

Collaboration: Two or more parties or organizations working together to pursue new approaches that achieve goals that satisfy all engaged priorities. In general, collaboration involves more than just an intersection of common goals, but actually working together to identify shared objectives.

Co-Investigator (CO-I): An individual with the Program Director/Principal Investigator in the scientific development or execution of a project.

Community Advisory Board: A panel that is made up of representatives of diverse layers of community. Its purpose is to provide a public forum for community members to present and discuss their needs and concerns related to the decision making process.

Community-based participatory research: A partnership approach to research that equitably involves, for example, community members, organizational representatives, and researchers in all aspects of the research process and in which all partners contribute expertise and share decision making and ownership.

Community engagement: Public participation that involves dynamic relationships and promotes a mutual exchange of information, ideas, and public agencies in a context of partnership and reciprocity. Community engagement can include varying degrees of involvement, decision-making, and control.

Confidentiality: The state of keeping or being kept secret or private.

Conflict of interest (COI): A situation in which a person is in a position to derive personal benefit from actions or decisions made in their official capacity.

Consent forms: A form that provides potential research subjects sufficient written information to decide whether to participate in a research study or not based on an explanation of the proposed research and the nature of the participation that is requested of them.

Clinical trial agreement (CTA) - An agreement or contract between the university and another party relating to the conduct of a clinical trial or study.

De-identified biospecimens or data: Health information that does not identify an individual and with respect to which there is no  reasonable basis to believe that the information can be used to identify an individual is not individually identifiable health information.

Diffusion research: The process by which an innovation is communicated over time among the participants in a social system.

Dissemination research: A planned process that involves consideration of target audiences and the settings in which research findings are to be received and, where appropriate, communicating and interacting with wider policy and health service audiences in ways that will facilitate research uptake in decision-making

Dissemination: The act of spreading something, especially information, widely; circulation.

Effectiveness: The degree to which something is successful in producing a desired result; success.

Efficacy: The ability, especially of a medicine or a method of achieving something, to produce the intended result. The available body of facts or information indicating whether a belief or proposition is true or valid. Proof supporting a claim or belief.

Evidence: The effectiveness of an intervention in achieving an outcome that will create lasting changes in the health of the population.

Evidence-based: Denoting disciplines of health care that proceed empirically with regard to the patient and reject more traditional protocols.

Exclusion Criteria: Characteristics that disqualify prospective participants from inclusion in the study.

Health Disparities: "Differences in health status among distinct segments of the population including differences that occur by gender, race, or ethnicity, education or income, disability, or living in various geographic localities."

Health Equity: A situation in which all people have the opportunity to achieve their full health potential, with no one at a disadvantage because of socially-determined circumstances.

Health outcomes: A change in the health status of an individual, group, or population as the result of planned or unplanned interventions rather than simply change over time.

Health Impact Assessment (HIA): The health impact assessment process is "a systematic process that uses an array of data sources and analytic methods, and considers input from stakeholders to determine the potential effects of a proposed policy, plan, program, or project on the health of a population and the distribution of those effects within the population. An HIA provides recommendations on monitoring and managing those effects."

Health Inequality: A measurable characteristic of an individual, population, or environment that can be used to describe its health status.

Health Insurance Portability and Accountability Act (HIPAA): A U.S. law designed to provide privacy standards to protect patients' medical records and other health information provided to health plans, doctors, hospitals and other health care providers.

Health Lens: A systematic way of finding opportunities to improve health and embed health in decision-making.

Health Outcome: A change in the health status of an individual, group, or population as the result of planned or unplanned interventions rather than simply change over time.

Healthy Community: A community that embodies economic, physical, social, and service environments that are known to promote health.

Human Subject: A living individual about whom an investigator (whether professional or student) conducting research obtains data through intervention or interaction with the individual or obtains identifiable private information.

Implementation: The process of putting a decision or plan into effect; execution.

Inclusion criteria: Characteristics that the prospective subjects must have if they are to be included in the study.

Informed Consent: Permission granted in the knowledge of the possible consequences, typically that which is given by a patient to a doctor for treatment with full knowledge of the possible risks and benefits.

Institutional Review Board (IRB): An administrative body established to protect the rights and welfare of human subjects recruited to participate in research activities conducted under the auspices of the organization with which it is affiliated.

Interdependence: A relationship between individuals, communities, or individuals and the communities in which they live, such that each is mutually reliant upon and responsible for the other.

Intervention: Action taken to improve a situation, especially a medical disorder.

Investigator: A person who carries out a formal inquiry or investigation.

Memorandum of Understanding (MOU): An agreement between two (bilateral) or more (multilateral) parties.

Minimal Risk: The probability and magnitude of harm or discomfort anticipated in the research are not greater than those ordinarily encountered in daily life or during the performance of routine physical or psychological examinations or tests.

Monitoring: Observing and checking the progress of quality of something over a period of time; keep under systematic review.

The National Institute of Minority Health and Health Disparities (NIMHD): An American government health institute that oversees several programs central to NIH's mission of uncovering new knowledge that will lead to better health for everyone.

Outcomes: The way a thing turns outs; a consequence.

Participatory research: Is an approach to research in communities that emphasizes participation.

Patient population: The demographics and other particulars of a population being serviced.

Personally identifiable Information (PII): 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.

Protected Health Information (PHI): Demographic information, medical history, test and laboratory results, insurance information and other data that a healthcare professional collects to identify an individual and determine appropriate care. 

Practical Clinical Trials: Clinical trials for which the hypothesis and study design are developed specifically to answer the questions faced by decision makers.

Practice-based research network: A group of practices devoted principally to the care of patients and affiliated for the purpose of examining the health care processes that occur in practices.

Practice-based research: A form of research that aims to advance knowledge partly by means of practice.

Primary care research: Research done by members of the primary care team, with their patients and communities that they serve.

Principal Investigator (PI): The holder of an independent grant administered by a university and the lead researcher for the grant project, usually in the sciences, such as laboratory study or a clinical trial.

Protocol: The plan for a course of medical treatment or for a scientific experiment.

Registry: An organized system that uses observational study design study methods to collect uniform data (clinical and other) to evaluate specified outcomes for a population defined by a particular disease, condition, or exposure, and that serves one or more predetermined scientific, clinical, or policy purposes.

Research partnerships: A partnership approach to research that equitably involves, for example, community members, organizational representatives, and researchers in all aspects of the research process and in which all partners contribute expertise and share decision making and ownership.

Research Protocol: A document that describes the background, rationale, objectives, design, methodology, statistical considerations, and organization of a clinical research.

Retention: The continued use, existence, or possession of something or someone.

Revocation of Authorization: To revoke or cancel an existing authorization permitting release of Protected Health Information (PHI) to another person or organization.

Scalability: The ability to measure to measure and assign objects to numbers according to specified rules.

Social Determinants of Health: Conditions in the environments in which people are born, live, learn, work, play, worship, and age that affect a wide range of health, functioning, and quality-of-life outcomes and risks.

Stakeholders: Persons or groups that have a vested interest in clinical decision and the evidence that supports that decision.

Study design: A specific plan or protocol for conducting the study, which allows the investigator to translate the conceptual hypothesis into an operational one.

Target Population: The population, or group, that a researcher is interested in researching and analyzing.

Translational research: The process of applying knowledge from basic biology and clinical trials to techniques and tools that address critical medical needs specifically designed to improve health outcomes.

Underserved populations: Populations with a lack of access to primary care services.

Withdrawal of consent: A patient's voluntary termination of informed consent to participate in a clinical trial at any point during the conduct of the study.

CEnR/CBPR Acronym

ACE - Active Community Engagement

ALA - American Lung Association

AME Zion - African Methodist Episcopal Zion Church

ATSDR - The Agency for Toxic Substances and Disease Registry

CAB - Community advisory board

CAC - Community advisory committee

CBO - Community-based organization

CBPR - Community-based participatory research

CDC - Center for Disease Control and Prevention

CEC - Community Engagement Core

CEnR - Community-engaged research

CRC - Clinical Research Coordinator

CRF - Core Research Facilities services used in clinical trials

CTA - Clinical Trials Agreement

CTSA - Clinical and Translational Science Awards

CTSI - Clinical and Translational Science Institute

DCCR - Duke Center for Community Research

DCH - Division of Community Health

DCRI - Duke Clinical Research Institute

DOCR - Duke Office of Clinical Research

MOA - Memorandum of Agreement

MOU - Memorandum of Understanding

NCCU - North Carolina Central University

NCI - National Cancer Institute

NIH - National Institutes of Health 

PBR - Practice-based research

PBRN - Practice-based research network

PI - Principal investigator

PRC - Prevention Research Center

RCT - Randomized controlled trial

RFA – Request for application

RFP – Request for proposal

SOM - Duke - School of Medicine