GLOSSARY

This glossary is not intended to be a definitive list. Importantly, it draws on the work of other experts, and citations are provided throughout. Because the meaning of words can change and evolve we aim to design future versions to enable reader updates and modifications.

Academic Incentives: Monetary support, professional recognition, academic promotions, capacity enhancement (e.g., communications training), and other institutional structures to support and recognize individual efforts. (Jessani et al., 2020)

Accessibility: The design, construction, development, and maintenance of facilities,
information and communication technology, programs, and services so that all people, including people with disabilities, can fully and independently use them. Accessibility includes the provision of accommodations and modifications to ensure equal access to employment and participation in activities for people with disabilities, the reduction or elimination of physical and attitudinal barriers to equitable opportunities, a commitment to ensuring that people with disabilities can independently access every outward-facing and internal activity or electronic space, and the pursuit of best practices such as universal design. (White House, 2021)

Analytic Tools: Metrics, indices, diagrams, instruments, computational programs, models/frameworks (e.g., practical, statistical, theoretical), and other resources that support the analysis and interpretation of information. (SJSU.edu)

Antiracist Methods: A revolutionary way of doing research grounded in the understanding that racism is a fundamental cause of health inequities. (University of Minnesota)

Artificial Intelligence (AI): The ability of computer algorithms to perform tasks that typically require human intelligence. In medical practice, AI can shorten the time for clinical diagnosis, improve diagnostic accuracy, and reduce medical errors (NAM, 2022)

Assistive Technology: Products and devices that enable inclusion and participation by maintaining or improving an individual’s functioning and independence, such as hearing aids, eyeglasses, wheelchairs, prostheses, and other supports, particularly for people with disabilities, aging populations, and people with non-communicable chronic diseases (e.g., multiple sclerosis, congestive heart failure). (World Health Organization)

BIPOC: An umbrella term for individuals who identify as Black, Indigenous, (and) People of Color. (Selvarajah, Sujitha et al. 2020)

Big Data: Large datasets, such as those from hospital records, health monitoring devices, or biomedical research, as well as various other public and private sector entities that are relevant to health research and typically require advanced computational tools to analyze. (Dash et al, 2019)

Career Advancement: upward trajectory of a person’s professional journey, including but not limited to promotion and tenure. (McKay, 2018)

Citizen Science: The practice of public participation and collaboration in scientific research to increase scientific knowledge, usually through data collection and monitoring. (National Geographic, 2022)

Community Engagement: a process of developing relationships that enable stakeholders to work together to address health-related issues and promote well-being to achieve positive health impact and outcomes (World Health Organization)

Community-Based Participatory Research (CBPR): a partnership approach to research that equitably involves community members, organizational representatives, and academic researchers in all aspects of the research process. It enables all partners to contribute their expertise, with shared responsibility and ownership. (Israel et al., 1998)

Community-Driven Research: A research approach that bolsters campaigns aimed at reshaping systems of power and creating lasting change, effectively building and strengthening the member base of grassroots organizations, and informing long term strategies for change. Community-driven research leads to community generated solutions (Data Center)

Data Democratization: Everyone has free access to understandable data that can be used for decision-making; no gatekeepers but requires training and strong governance and curation to ensure quality accuracy and credibility. (Payne et al., 2018)

Data Equity: Data equity principles acknowledge the power data has in shaping community landscapes by encouraging a shift in practice by multiple data contributors to help eliminate health inequities, minimize bias in data and further repair trust with communities who have experienced prior harms. (CDC Foundation, 2022)

Data Governance: The people, processes, and organizational practices that foster collective decision-making about data management. (Office of the National Coordinator for Health IT)

Data Infrastructure: Data assets, such as datasets, identifiers, and registers; standards and technologies used to curate and provide access to data assets; guidance and policies that inform the use and management of data assets and the data infrastructure itself. (Dodds L. & Wells P., 2019)

Data Quality: The usefulness and credibility of data and products derived from data (e.g., statistics, analyses, and visualizations). Data and data products have high quality when they capture desired information using scientifically appropriate methods to represent reality in a manner that sustains public trust, which encompasses “utility, objectivity…integrity…and ‘fitness-for purpose.” (Department of Health and Human Services, 2022)

Data Science: A concept to unify statistics, data analysis, and their related methods to understand and analyze the actual phenomena with data. (Sarker, 2021)

Data Sharing: The sharing/transfer of information across systems and organizations, such as healthcare facilities, academic institutions, community-based organizations, and industry. (Hulsen, 2020)

Data Sources: Can include data that are already collected and data that will be collected during the study. Data Sources can be used to describe different data collection methods and/or tools. (University of Virginia)

Data Visualization: The graphical display of information for two purposes: sense making (or data analysis) and communication; using visual elements like charts, graphs, and maps, data visualization tools provide an accessible way to communicate and understand trends, outliers, and patterns in data. (Interaction Design Foundation; Harvard Business School; Khan &Khan, 2011)

Decolonizing Methods: An approach that is used to challenge the Eurocentric research methods that undermine the local knowledge and experiences of marginalized population groups. (Keikalame and Swartz)

Digital Health: The use of digital technologies for health—is increasingly recognized as a major driver of quality in health care (WHO, 2019). Digital health technologies (DHTs), such as telemedicine, electronic health records (EHRs), clinical decision support systems (CDSS), mobile health, computerized physician order entry, electronic prescribing systems, and web-based health services, can improve access and quality of health care services (Black et. Al, 2011; Alotaibi & Federico, 2017)

Disability: “A physical or mental impairment that substantially limits one or more major life activities” (ADA, 2009https://www.ada.gov/topics/intro-to-ada/). Disability may refer to any condition that makes it more difficult for the person with the condition to do certain activities or interact with the world around them (known as participation restrictions). (CDC, 2020)

Diversity: Refers to the identities we carry. There are many kinds of diversity, based on race, gender, sexual orientation, class, age, country of origin, education, religion, geography, physical or cognitive abilities, or other characteristics. Valuing diversity means recognizing differences between people, acknowledging that these differences are a valued asset, and striving for diverse representation as a critical step towards equity. (AMA and AAMC, 2021)

Engagement Science: The field of engagement science investigates: 1) the methods for, and practice of, engagement; 2) the development of evidence-based approaches or guiding frameworks for engagement; and 3) the application of these resources, to guide meaningful engagement of non-traditional stakeholders in research. (PCORI, 2018)

Equity: Refers to fairness and justice and is distinguished from equality. While equality means providing the same to all, equity requires recognizing that we do not all start from the same place because power is unevenly distributed. The process is ongoing, requiring us to identify and overcome uneven distribution of power as well as intentional and unintentional barriers arising from bias or structural root cause. (AMA and AAMC, 2021)

Ethics Review & IRB: Professional committees, commonly called Institutional Review Boards (IRB) or Ethical Review Boards (ERB), charged with ensuring that all research performed at a given institution upholds the principles of medical ethics and protects participants from undue risks. (International Society of Nephrology)

HSR Workforce Development: Efforts to build and enhance the supply, quality, skills, and composition of the health services research (HSR) workforce (e.g., professionals, trainees, students) by building programs that respond to emerging needs. (AcademyHealth)

Human-Centered Design: A process, mindset, and approach to solving complex problems based on the philosophy that products, services, systems, and experiences should be (informed by and) designed to address the core needs of those who experience a problem; also known as “design thinking.” (DC Design, 2017)

Impact Assessment: A structured process for considering the implications, for people and their environment, of proposed actions while there is still an opportunity to modify (or even, if appropriate, abandon) the proposals. It is applied at all levels of decision-making, from policies to specific projects. (International Association for Impact Assessment)

Impact Factor: A measure of the frequency with which the average article in a journal has been cited in a particular year. It is used to measure the importance or rank of a journal by calculating the times its articles are cited. (University of Illinois, 2023)

Implementation Science: The scientific study of methods to promote the systematic uptake of research findings and other evidence-based practices into routine practice, in order to improve the quality and effectiveness of health services. The field seeks to systematically close the gap between research and practice by identifying and addressing the barriers that slow or halt the uptake of evidence-based health care interventions and strategies. (Bauer M et al, 2015)

Improvement Science: A multidisciplinary, applied science that emphasizes innovation, rapid-cycle field testing, and spread to generate learning about what changes produce improvement and under what conditions and contexts. (Institute for Healthcare Improvement, 2023)

Inclusion: Providing equal opportunity to all people to fully engage themselves in creating an environment and a cultural attitude whereby everyone and every group feels accepted, has value, and is supported by a foundation based on trust and mutual respect. (AcademyHealth, 2020)

Information Design: The practice of presenting information in a way that makes it most understandable and accessible to audiences and users. (SEGD, 2022)

Innovation: The process making meaningful change to improve products, processes, or organizational effectiveness and create new value for stakeholders, or the outcome of innovation: a discontinuous or breakthrough change. (Department of Commerce, National Institute of Standards and Technology, 2019)

Interoperability: The ability of two or more systems to exchange information and to use the information after it is received. (Office of the National Coordinator for Health Information Technology, 2013)

Intersectionality: Frameworks and strategies that address a vision of racial justice that embraces the intersections of race, gender, class, and the array of barriers that disempower those who are marginalized in society; coined by Kimberle Crenshaw (African American Policy Forum).

Learning Health System (LHS): A health system that integrates internal data and experience with external evidence and puts the combined knowledge into practice to improve care quality and safety, the patient experience, and the working environment. (Agency for Healthcare Research and Quality, 2019)

Machine Learning: The field and practice of using algorithms that are able to “learn” by extracting patterns from a large body of data. This contrasts to traditional rule-based algorithms. Machine learning has an adaptive approach that looks over a large body of all possible outcomes and chooses the result that best satisfies its objective function. (IT Modernization CoE, 2019)

Mixed Methods: Integrates or combines rigorous quantitative and qualitative research methods to draw on the strengths of each. (Harvard Catalyst)

Natural Langauge Processing (NLP): A branch of AI that focuses on how computers can process language in the way that humans do, e.g., analyzing text and drawing meaningful conclusions. (Harvard Business Review, 2022)

Open Access: The free and immediate online/digital availability of research. (SPARC)

Open Science: Aims to make scholarly data, research methodologies, including code or algorithms, and scholarly publications freely available, accessible, and usable for the public. (National Academies of Sciences, 2018)

Organizational Change: refers to the actions in which a company or business alters a major component of its organization, such as its culture, the underlying technologies or infrastructure it uses to operate, or its internal processes. (Stobierski, 2020)

Patient Centeredness: An approach to health research or practice that is oriented around and responsive to individual patients’ goals, needs, preferences, and values (GNPV). (Ree, E. et al. 2019)

Patient Privacy: Includes personal space, personal data, personal choices including cultural and religious affiliations, and personal relationships with family members and other intimates. (American Medical Association)

Patient and Consumer Engagement: Collaboration between consumers, patients, researchers and delivery systems leaders to improve the relevance and application of health services research. (AcademyHealth)

Peer Review: A process in which journal editors and other expert scholars critically assess the quality and scientific merit of the article and its research. Articles that pass this process are published in the peer-reviewed literature. Peer-reviewed journals may include the research of scholars who have collected their own data using an experimental study design, survey, or various other study methodologies. They also present the work of researchers who have performed novel analyses of existing data sources. (National Library of Medicine)

Person-Generated Health Data: Also known as Consumer-Generated Health Data. Health-related data created, recorded, or gathered by or from patients, caregivers, and/or family members to help address a health concern. (Office of the National Coordinator for Health IT, 2020)

Political Determinants of Health: The systematic process of structuring relationships, distributing resources, and administering power, operating simultaneously in ways that mutually reinforce or influence one another to shape opportunities that either advance health equity or exacerbate health inequities. (Dawes, D. 2020)

Predictive Analytics and Modeling: Predictive analytics is the use of data to predict future trends and events. It uses historical data to forecast potential scenarios that can help drive strategic decisions. (Harvard Business School, 2021)

Preprint: A version of a scientific manuscript posted on a public server prior to formal peer review. (PLOS)

Promotion and Tenure: Tenure is attained by the faculty member through distinction in teaching, research/scholarship/creative activity, and/or service to the university and the profession. Promotion is the appointment of a faculty member to a higher academic rank in recognition of distinguished performance. (University of Florida, 2018)

Public and Population Health: The study of how we deliver and integrate services that affect the health of communities, and of how we promote healthy communities. (Centers for Disease Control and Prevention, 2020)

Real-World Evidence: Data from various sources (e.g., claims, electronic health records, product and disease registries, patient-generated health data, mobile and wearable devices, and others) related to patient health status and/or treatment and care delivery. (U.S. Food & Drug Administration, 2022)

Remote Monitoring: A form of telehealth that allows clinicians to monitor and manage patients who are in different physical locations and who have chronic conditions using electronic devices, including smartphones, sensors, web portals, and other technologies that can collect, transmit, evaluate, and communicate health information. (HHS, 2022)

Research Design: The blueprint for the collection, measurement, and analysis of data to effectively address the research problem. (De Vaus, 2006)

Research Funding: Public and private financial support to conduct scientific research, usually awarded through a competitive process. (NSF)

Research Governance: The processes, structures, and systems of administration and supervision to manage research, protect participants and research staff, and ensure accountability to stakeholders. (Shaw, Sara et al., 2005)

Returning Value: Individuals who take part in clinical research studies donate their time, health information, and complete other tasks depending on the nature of the study. Various incentives are often used to compensate participants for their contributions, though value can be returned in various forms: monetary and non-monetary compensation, eligibility for an experimental treatment, access to cutting edge health information and technology, or altruistically contributing to the greater good of the medical community. (Simon G, et al.)

SOGI: An abbreviation for sexual orientation and gender identity. Sexual orientation is an inherent or immutable enduring emotional, romantic or sexual attraction to other people. Note: an individual’s sexual orientation is independent of their gender identity. Gender identity refers to how people conceptualize themselves as gendered beings, including one’s innate and personal experience of gender. This may or may not align with one’s gender expression or biological sex. (AMA and AAMC, 2021)

Shared Decision-Making: Patient-centered and values-focused communication approaches embodied in shared decision making can foster patient autonomy and comprehension and support the ethical recruitment of patients for clinical research. (Office of the National Coordinator for Health Information Technology, 2013)

Social Determinants of Health: Conditions in the environment where people are born, live, learn, work, play, worship, and age that affect a wide variety of health, functioning, and quality of life outcomes and risks (Healthy People 2030).

Social Justice: Both a process and a goal. The goal of social justice is full and equal participation of all groups in a society that is mutually shaped to meet their needs. Social justice includes a vision of society in which the distribution of resources is equitable, and all members are psychologically and physically safe and secure.” (Adams, 2007)

Storytelling: A research method in various disciplines such as social work, health care and its delivery, and anthropology. It is distinctive from the scientific research paradigm and other forms of narrative research in that storytelling seeks to personalize and engage proactively with its research population through deliberate intervention, as research with—not on—people. (McCall B, et al, 2019)

Structural Racism: The normalized range of policies, practices, and attitudes that routinely produce cumulative and chronic adverse outcomes for people of color (Brown University, 2015) and the totality of ways in which societies foster racial discrimination through mutually reinforcing systems of housing, education, earnings, benefits, credit, media, healthcare, and criminal justice. (AMA, 2021)

Syndemic Theory: Synergistically related, clustered epidemics that arise from harmful social conditions. (Rudd KE, et al. 2022)

Systems Science: An interdisciplinary field that studies the complexity of systems in nature or in social and scientific endeavors. (Columbia University, 2022)

Systems Thinking: An approach to problem-solving that examines the component parts of a system (e.g., a car, a subway system) and how they interact with each other to form a whole. (Acaroglu L., 2017)

Team Science: A collaborative effort to address a scientific challenge that leverages the strengths and expertise of professionals from different disciplines and perspectives. (National Cancer Institute, 2021)

Telehealth: The use of electronic information and telecommunications technologies to support long-distance clinical health care, patient and professional health education, health administration, and public health. (Health Resources & Services Administration, 2022)

Translation, Dissemination, and Implementation: Evidence and programs that help research producers better understand the needs of research users, help place research in context, and test new and innovative approaches to moving knowledge into action. (AcademyHealth)

User-Centered Design: A multi-disciplinary design approach to developing interactive systems that focuses on making them usable in terms of effectiveness, efficiency, and satisfaction. (W3C, 2008)

Workforce Diversity: Workforce diversity means similarities and differences among employees in terms of age, cultural background, physical abilities and disabilities, race, religion, gender, and sexual orientation (including individual characteristics, values, beliefs, experiences, backgrounds, preferences and behaviors). (Gartner)