Developing and sustaining inclusive language in biomedical informatics communications: an AMIA Board of Directors endorsed paper on the Inclusive Language and Context Style Guidelines

Abstract

Objectives

In 2023, AMIA’s Inclusive Language and Context Style Guidelines (the “Guidelines”) were approved by the Board of Directors and made a publicly available resource. This work began in 2021 through AMIA’s DEI Task Force and subsequent DEI Committee; many members provided input, feedback, and time to create the Guidelines. In this paper, the authors provide a transparent account of the origin, development, contents, and dissemination of the Guidelines and share plans for their future development and use.

Materials and Methods

Our approach to drafting, refining, and distributing the Guidelines included consulting existing language guides, AMIA member reviews, external expert reviews, webinars, and workshops. Through an iterative approach to drafting and refining the Guidelines, the authors consulted relevant language guidelines and many experts throughout and beyond the AMIA community.

Results

The Inclusive Language Context Guidelines were formally approved by the AMIA Board of Directors on February 15, 2023. The Guidelines included four principles to be considered in scientific communications: Plurality, Precision, Transparency, and Destigmatization.

Discussion

A moment of vulnerability where an AMIA member raised concerns about the use of harmful language during a presentation resulted in the creation of a principled approach to support inclusive language within biomedical and health informatics communications. We envision that the Guidelines will support health equity by challenging dominant public narratives around health, fostering stronger interdisciplinary collaboration and critical thinking about the impact of language, and creating a more welcoming environment for the broader AMIA community. This work could not have been completed without the support of many AMIA members and other researchers in biomedical and health informatics. The Guidelines are a living document that will continue to be updated with input and feedback from the AMIA community into the future.

Background and motivation

Language is a primary tool for expression and communication within societies. Over time, language shifts and changes as cultures socially construct the meanings of language, which in turn help shape our views of the world, how ideas are communicated, and how information is delivered.^1,2 Within scientific communities, language facilitates a shared understanding of research questions, complex concepts, and guides rigorous methods through agreed-upon definitions and interpretations. In health sciences fields, stigmatizing language can result in negative attitudes toward patients,³ harmful language is not evenly distributed among patient populations,⁴ and certain language can negatively impact health equity efforts and affect public policy.^5,6 Additionally, stigmatizing language used to report on the opioid epidemic may not only harm groups but also discourage evidence-based public health policy.⁷ These kinds of public narratives about health, narratives often repeated and upheld by the dominant culture that forms ways to understand the world,⁸ must be challenged on a path toward health equity.

Acknowledging these tangible impacts associated with language in biomedical and health informatics research, in 2021, AMIA’s Diversity, Equity, and Inclusion (DEI) Task Force—and the subsequently formed DEI Committee—took key actions to establish best practices for language use in biomedical and health informatics research to strengthen our science and practice.⁹ One key action was the creation of inclusive language guidelines that can facilitate rigorous informatics research and scientific communications. As professional health organizations began sharing their own language guidelines,^10–14 AMIA’s DEI Committee recognized the need to synthesize existing resources and provide guidance for inclusive scientific communication, especially as this communication relates to the discovery, translation, and implementation of biomedical and health informatics innovations. The Communications Subcommittee, a subcommittee of the DEI Committee, championed this effort.

In 2023, AMIA’s Inclusive Language and Context Style Guidelines (“the Guidelines” for short) was approved by the Board of Directors and made a publicly available resource. Since its official launch, the Guidelines have reached thousands of people through its relevant webinars, workshops, conference submission processes, and online resources.

In this paper, the AMIA DEI Communications Subcommittee summarizes and provides insight into the origin, development, contents, and dissemination of the Guidelines. Our aim is to provide a transparent account of the development of the Guidelines and share plans for their future development and use. We envision that the Guidelines will support health equity by challenging dominant public narratives around health, fostering stronger interdisciplinary collaboration and critical thinking about the impact of language, and creating a more welcoming environment for the broader AMIA community.

Origin and approach

During a presentation at the AMIA 2021 Informatics Summit, an attendee raised concerns about the use of the acronym “URM”—used to represent “underrepresented minority” in a shorthand manner—as being potentially harmful to certain AMIA members because it was being used to homogeneously define a diverse group of people.¹⁵ AMIA’s DEI Committee leadership recognized this as an opportunity for growth. By speaking up to our Committee about the harm caused by homogenizing and diluting distinct identities, this participant provided an opportunity to reflect on and change how inclusive language within AMIA is viewed. It is important to reiterate here that the root issue is not the use of the term “URM,” rather, the root issue is erasing the heterogeneity of people with multiple distinct identities with an overly simplistic grouping. We are thankful to this participant for their courage and vulnerability to be that spark for change.

While preparing to develop inclusive language guidelines, we agreed it was not possible or responsible to prescribe “correct” language or provide a “use this, not that” guide, given the context-dependent nature of language. For example, person-first language, refraining from using labels or adjectives to define individuals,¹⁶ has been challenged as the “correct” language to use for certain communities. For example, there have been disagreements within the disability community on whether to use language such as “disabled person” vs “person with a disability.”^17,18 Additionally, while it can be a start, simply removing language from our shared vocabulary does not necessarily change the underlying issues or stigmas associated with to whom or what is being referred.^1,2,19

Instead, our intention was to help people think critically about how they use language throughout their research and dissemination process, as well as the impact language has on their social interactions and sharing scientific work. Doing so helps us better communicate and connect with the communities engaged with and affected by our research. Our intended audience for the Guidelines is the entire AMIA community, including members, authors, presenters, and reviewers. However, we hope that these Guidelines can serve as a resource for the broader biomedical and health informatics field. Overall, our goal has been for the Guidelines to be specific, actionable, and broad enough to cover a variety of potential situations while leaving room for critical thinking and interpretation.

Development of the Guidelines

The development of the Guidelines was a rigorous, collaborative, and iterative process incorporating insights from diverse partners both within and external to our organization. Through extensive discussion, research, and expert consultation we developed grounding principles for the Guidelines. Initially, a glossary-based format was proposed; however, key partner feedback highlighted the dynamic nature of language and its continuous evolution. Therefore, we sought to create principle-based guidelines whose examples can be updated as language evolves to remain responsive to cultural progress. This adaptive format not only allows for the dynamic nature of language but also fosters critical thinking and examination of language and enables tailored interpretation based on the audience’s position (eg, reviewer, author, presenter, or researcher).

We collected guidelines from other institutions, such as the Centers for Disease Control and Prevention, the American Medical Association, and the Gay and Lesbian Alliance Against Defamation to inform which topics to include.^10–14 These guidelines were selected based on their rigorous development process, basis in peer-reviewed research, collaboration with community leaders, and relevance to biomedical research. From this foundation, we created examples specific to biomedical and health informatics, such as secondary data use, qualitative methods, social drivers of health, and patient engagement. Our approach emphasized providing the AMIA community with guiding principles rather than simply suggesting word replacement. To support critical thinking, we provided the context for examples along with resources for a more complete and nuanced picture. Specifically, each principle is accompanied by a description, examples with common sentences used in biomedical and health informatics research, a rewritten principle-based sentence, context, and additional resources relevant to the example. These resources were identified using domain knowledge, crowdsourcing, and keyword search, where keywords were derived by looking through resources from DEI-related groups in related fields.

Feedback and review process

Given that the Guidelines would impact a large number of AMIA members, we sought feedback frequently throughout the development process. Beyond feedback from DEI Committee members and the AMIA community, we engaged external reviewers to ensure broader diversity in identity, experiences, and domain-specific expertise regarding particular populations.

Internal AMIA review

Figure 1 illustrates the iterative writing and review process. First, a team of specialists in inclusive language, content structure, and AMIA Scientific Program Committee knowledge collaboratively drafted the Guidelines (T.J.B., O.B.D.W., R.F., C.K.). The process began with a search for DEI-related groups in medical informatics, medicine, informatics, computer science, and engineering fields, focusing on representation groups for disability and neurodiversity, incarceration, migration, race and ethnicity, youth, class and caste, and gender/sex/sexuality. The team examined the resources recommended by these groups, in addition to more generally applicable style guides in the specific content area. The team also held a meeting with the AMIA DEI Committee, where together they identified more resources and discussed gaps an AMIA-specific resource could address.

Figure 1.

Iterative writing and review process flowchart. ** represents a parallel process; represents an iterative process.

The team (T.J.B., O.B.D.W., R.F., C.K.) distributed the first draft of the Guidelines to an initial panel of reviewers chosen to represent diverse perspectives (eg, academia, industry, health care, and DEI). These reviewers were drawn from the Columbia University Justice Informatics Collaborative, leveraging their emerging expertise in exploring the sociopolitical and historical context of biomedical and health informatics research, including systems of oppression and privilege in our lives.²⁰

External expert review

Next, the AMIA DEI Communication Subcommittee (J.W.F., V.K., D.(H.)W., T.I.L., N.Y., S.L., O.O., R.L.R., S.H., H.H.) further refined the Guidelines, incorporating the first round of feedback received from the reviewers. In parallel, members of the AMIA DEI Communication Subcommittee enlisted experts who were independent of the subcommittee (B.I., L.G.D., I.D.-M., A.G.P., A.R.E., V.S., D.M.K.) to clarify examples, suggest phrasing, include additional relevant citations, and address organizational concerns. These experts contributed diverse expertise spanning biomedical and health informatics, human-computer interaction, health equity, cultural understandings of gender and sexuality, standardization and collection of social drivers of health, community-engaged and participatory research, Indigenous health, and transgender health. Compensation ($500) was offered to each expert, according to the terms of an Advisor Agreement, to review, provide feedback, and acknowledge their contributions to the Guidelines.

Using shared folders and documents, the subcommittee members thoroughly incorporated the expert feedback. The team leading the authorship of the Guidelines solicited a final round of feedback from the subcommittee members, then refined and finalized the content.

AMIA Annual Symposium Workshop

Holding a workshop at the largest annual AMIA meeting was an ideal way to provide an early introduction to the Guidelines and conduct hands-on activities to apply them to different scholarly communications. The workshop format also enabled the DEI Communications Subcommittee to directly connect with AMIA community members, gauging their responsiveness to the Guidelines and soliciting feedback on its planned content.

The half-day workshop, titled “Concepts and Practice of Diversity, Equity, and Inclusion (DEI) in the Scholarly Communication for Biomedical Informatics” led by the DEI Communications Subcommittee, was accepted for the 2022 AMIA Annual Symposium in Washington, DC, and was held on Saturday, November 6. The workshop agenda consisted of an introductory presentation describing the motivation, development, and content of the Guidelines, group activities, panel discussions, a poster session, and a keynote remark.

We hosted small-group activities and a panel discussion on how to apply the Guidelines to real-life examples in scientific communications. Attendees shared their experiences with using and the impact of inclusive language in scholarly communications, such as publications and professional networking. Using a rubric, organizers selected twelve posters from among the accepted Symposium submissions that showcased exemplary use of inclusive language.^21–32 This workshop saw an average of 75 and a maximum of 90 attendees. At its conclusion, participants were asked to share their feedback on the workshop and Guidelines via online and paper surveys.

Board approval

A final draft of the Guidelines—incorporating internal, external, and workshop attendee comments—was shared with member-volunteers of the AMIA Board of Directors for an additional round of feedback. After incorporating their feedback, we submitted the final version for a Board vote to approve and adopt the Guidelines as a resource for AMIA. The Guidelines were formally approved by the AMIA Board of Directors on February 15, 2023.

AMIA’s 4 guiding principles of inclusive language

The official Guidelines are available to AMIA and the public.⁹ We formatted the document to support easy navigation and section delineation for enhanced usability. For each of its 4 guiding principles, we provide a definition, an example of a relevant common sentence, and a revised version of that sentence that takes the principle into account. Table 1 provides a brief overview of the 4 principles and justification for their importance.

Table 1.

Overview of the 4 principles from AMIA’s Inclusive Language and Context Style Guidelines (plurality, precision, transparency, destigmatization).

Plurality: The principle of plurality encompasses the idea that there may not be 1 correct way to refer to a person or people, as how someone identifies may be contextually dependent.33–35 Plurality highlights the importance of context and personal preference for language use, recognizing there may not be 1 term that all people from a specific group agree on. When referring to research participants, authors are encouraged to ask and honor their preferred terms. Furthermore, plurality can extend to scientific communications to help build trust between researchers and the public by showing that patient and participant voices are respected throughout the scientific process

Precision: Precise language is necessary to effectively describe significance and innovation, communicate approaches, convey results, and support reproducibility. For example, as a field, we have multiple articles and textbooks that discuss the definition of biomedical informatics and biomedical data. There is also a need to practice this kind of precision with the language we use to describe participants, patients, and community partners, as well as their data. For example, grouping participants who did not fit into predefined racial categories as “Other,” can erase potentially important racial information for future researchers if not properly defined. Therefore, precision involves thoughtful reflection on the specificity and relevance of the language used to define terms and describe study aspects. Doing so minimizes ambiguity and encourages more accurate scientific knowledge, particularly when transferring or generalizing study results

Transparency: Transparency pertains to how data are collected, measured, and analyzed, and allows the research community to identify limitations, further contextualize results and conclusions, and provide avenues for future research. Without transparency, our research can contribute to bias, suboptimal treatments, and discriminatory access to appropriate health care. For example, previously collected data on Native American patients may have required tribal affiliation excluding descendants of nonfederally recognized tribes. Research using these data and explicitly stating this limitation could lead to reformed data collection standards. Acknowledging limitations allows us as scientists to move forward with primary or secondary research to the best of our ability in an ethically responsible manner

Destigmatization: Many of the common terms used to describe people based on experiences with negative connotations (eg, addict, abuser) can assign stereotypes resulting in exclusion from communities and discrimination. Such terms in all forms of communication can deepen implicit cognitive biases, perpetuate stigma, and influence public opinion, health policies, and funding programs.3,36,37 Stigmatizing language at the patient-provider level can also be associated with health outcomes.38 Using destigmatized language is one way to build trust and participation in communities that have been harmed or exploited by previous and current research practices. For example, using stigmatizing language in recruitment materials can be a barrier to participation.39 Interrogating the language used to describe research participants and data from various populations can have a significant impact on how the public views scientific research. With careful attention to language, we can begin to reduce the burden of stigma and consequent negative health outcomes

Our impact and vision for the future

To date, the Guidelines have had extraordinary reach and high impact across AMIA. Going forward, we envision the Guidelines being woven into the fabric of AMIA through scientific research, communications, and community engagement.

Dissemination of the Guidelines

Following AMIA Board approval, we sought to make it easy for AMIA community members to find the Guidelines and access the content in their preferred learning modality (eg, reading, audio, or visual). Working closely with AMIA staff, we created an AMIA webpage (https://amia.org/InclusiveLanguage). This page is a central hub of information, which includes the Guidelines as approved by the AMIA Board and a description of its purpose for the AMIA community. The page also provides direct links to the 2 supplementary resources and webinars about using the Guidelines.

The first supplementary resource is a short 3-min video with voiceover, for people who prefer processing information in audio/visual formats. The video defines the 4 guiding principles of the Guidelines. Drawing from specific examples in the full document, the video showcases how scholars can rephrase or add details to their work according to the 4 guiding principles. The second supplementary resource is a 1-page handout, to support AMIA community members who prefer quick refreshers on how to use the Guidelines during the authorship and peer-review process.

As of August 2024, the AMIA Inclusive Language website has been viewed over 4651 times by 2263 unique visitors since its initial launch. The Guidelines have been downloaded 754 times, the short video has been viewed 226 times, and the 1-page handout has been downloaded 476 times.

Integration within AMIA

The DEI Communications Subcommittee has also made important strides in incorporating the Guidelines into AMIA meetings, successfully advocating for it to be considered during peer review for AMIA-related publication venues.⁴⁰ In 2023, we took the first steps to integrate the Guidelines into the AMIA Annual Symposium submission process, quickly followed by the Informatics Summit and Clinical Informatics Conference. In the submission process, we asked authors and reviewers to assess the Guidelines’ relevance to submissions. In 2024, a total of 2694 submissions and 9264 reviews were received by the Annual Symposium, Informatics Summit, and Clinical Informatics Conferences. Across all 3 venues, 67.93% of reviews and 69.45% of accepted submissions attested that the Guidelines were relevant and used appropriately. Our goal is to continue improving and scaling this process across other conferences and journal venues.

Beyond these efforts, the DEI Communications Subcommittee has led or collaborated on AMIA webinars (48 views) and workshops at the 2023 AMIA Annual Symposium (average 35 attendees), 2024 Clinical Informatics Conference (average 25 attendees), 2024 Medical Informatics Europe Conference (estimated 25 attendees), and 2024 AMIA Annual Symposium (average 41 attendees). By continuing to hold such workshops in the future, we aim to raise awareness about the Guidelines, share learnings from experts on how to apply the Guidelines, and create channels for AMIA community members to provide constructive feedback.

Continuous learning and improvement

The Guidelines is a living document. We continuously seek, analyze, and incorporate feedback from various channels. On our Inclusive Language webpage (https://amia.org/InclusiveLanguage), AMIA community members at any time can submit feedback via an online form. We aim to regularly collect input from the AMIA Events (eg, Annual Symposium, Clinical Informatics Conference, Informatics Summit) Scientific Program Committee (SPC) members and reviewers on using the Guidelines during the peer-review process. Their input helps measure whether changes made to the review process better support incorporating inclusive language for reviewers and authors. We also solicit feedback from our workshop attendees, whose diverse views can inform upcoming event topics and shape future directions of the Guidelines. To date, we have identified several areas for improvement from the feedback gathered so far, including: (1) conveying relevance and application of the Guidelines to technical or methods-focused research, (2) providing specific training and examples of effective inclusive language, and (3) setting expectations that the Guidelines are meant to be informative rather than prescriptive or restrictive.

The DEI Communications Subcommittee plans to release new updates to the Guidelines at periodic intervals. We will consider factors such as what changes constitute a major or minor update, the timing of Board reviews and approvals, the bandwidth of external expert reviewers, and the timing of conference submission processes. Regularly updating the Guidelines will ensure we remain responsive to community feedback and continue to evolve as language changes over time. In the near future, we plan to address informatics-related inclusive language around additional topics and themes, including immigrant experiences, disability, and neurodiversity. Engaging communities directly in how they want to be represented and described in scholarly communications is a key component of the forthcoming versions of the Guidelines. As we continue to engage experts and communities, we will also work to establish an appropriate acknowledgement and timely compensation process for their contributions to AMIA’s inclusive language initiatives.

Advancement of health equity

The Guidelines are just one component of many larger, longer term efforts to increase AMIA’s diversity in thought, skills, demographics, research expertise, and knowledge advancement. This resource plays a critical role in helping people within and beyond AMIA to recognize the importance of language in day-to-day scholarly work.

To advance health equity, AMIA members are well positioned in their fields to lead change by applying inclusive language. We must continuously reflect on how language affects our perceptions and biases of the communities we study, which in turn influences our clinical decisions, evidence generation, technology implementations, and policy recommendations. The Guidelines provide a lens to critically examine the impact of our language and research on real people—including their health-care access⁴¹ and outcomes⁴²—as we strive to reduce disparities.

Our inclusive language efforts enable members of AMIA to exemplify leadership in equitable and ethical research by using intentional language to communicate significant contributions and foster an inclusive scientific community.

Navigating policy changes around diversity, equity, and inclusion

There have been substantial policy changes in the United States around DEI during the development of the Guidelines and this paper. While addressing how professional organizations should handle this changing landscape around DEI is beyond this paper’s scope, language is a major way to promote or stifle health equity.⁴³ Notable are changes to the type of language scientists and other professionals should use. Recent policy changes affecting acceptable language^44,45 may parallel our work in some ways, but differ in 2 important ways: (1) we provide context for suggested changes and (2) that context encourages others to think critically about the language they use, thus improving scientific rigor. It will be important for scientists and their organizations (professional, journals, etc.) to continue considering how changing language also affects how they approach their organization’s mission and values, especially when determining how to respond to federal guidelines. For example, efforts to increase broad representation will be stymied if we cannot identify which subgroups are not represented, such as using imprecise language to binarize gender in a conference experience survey and thus burying nonbinary people’s experiences. One hope is that by continuing to ground actions and approaches in science, scientists and our organizations can continue to follow, update, and defend practices for promoting DEI. However, policies do not always follow scientific evidence. Going forward, individuals and organizations will need to weigh the immediate and potential long-term effects of changing language on membership and community perception, scientific rigor, and fiduciary responsibilities. There is no easy answer, but the work presented here demonstrates that informaticians are concerned about how language affects science and impacts.

Author contributions

Oliver J. Bear Don't Walk IV (Conceptualization, Supervision, Writing—original draft, Writing—review & editing), Shefali Haldar (Formal analysis, Writing—original draft, Writing—review & editing), Duo Wei (Investigation, Writing—original draft, Writing—review & editing), Hu T. Huang (Writing—original draft, Writing—review & editing), Rebecca Rivera (Writing—original draft, Writing—review & editing), Jungwei Fan (Writing—review & editing), Vipina Keloth (Writing—review & editing), Tiffany I. Leung (Writing—review & editing), Pooja Desai (Writing—review & editing), Diane Korngiebel (Writing—review & editing), Lisa Grossman Liu (Writing—review & editing), Adrienne Pichon (Writing—review & editing), Vignesh Subbian (Writing—review & editing), Anthony Solomonides (Writing—review & editing), Laura K. Wiley (Writing—review & editing), Omolola Ogunyemi (Writing—review & editing), Gretchen Purcell Jackson (Writing—review & editing), Irene Dankwa-Mullan (Writing—review & editing), Lisa Dirks (Writing—review & editing), Avery Rose Everhart (Writing—review & editing), Andrea Grimes Parker (Writing—review & editing), Bradley Iott (Writing—review & editing), Clair Kronk (Conceptualization, Writing—original draft, Writing—review & editing), Randi E. Foraker (Conceptualization, Writing—original draft, Writing—review & editing), Krista Martin (Writing—review & editing), Tara V. Anand (Writing—review & editing), Salvatore Giovanni Volpe (Writing—review & editing), Nathan Yung (Writing—review & editing), Rubina Rizvi (Writing—review & editing), Robert Lucero (Writing—review & editing), and Tiffani Bright (Conceptualization, Writing—original draft, Writing—review & editing)

Funding

This research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors.

Conflicts of interest

O.B.D.W., G.P.J., T.J.B., T.I.L. are current or past AMIA Board Members. R.L.R., O.B.D.W., T.J.B., and R.L. are current and past Chairs of the AMIA DEI Committee. T.I.L. is the Scientific Editorial Director of JMIR Publications, past Co-Chair of the Women in AMIA (WIA) Steering Committee and past Chair of the WIA Awards & Leadership Subcommittee. H.H. and R.L.R. are past Co-Chairs of the AMIA DEI Communications Subcommittee. S.H. is currently Co-Chair of the AMIA DEI Communications Subcommittee and editorial board member of Informatics for Health and Social Care. K.M. is an employee of AMIA. V.S. is past Chair of 2 AMIA working groups, current member of the AMIA Journals & Publication Committee, and an associate editor of Applied Clinical Informatics.

Data availability

The survey, conference attendance, and submission data underlying this article cannot be shared publicly due to the privacy risk of submitters to AMIA conferences and the risk of disclosing unarchived scientific content.

Positionality statement

The co-authors of this paper represent diverse backgrounds, including but not limited to gender, race, ethnicity, and domain knowledge. We all share a passion for advancing DEI and achieving health equity. Although we each live with unique identities, we recognize that we cannot represent all perspectives or areas of expertise. In having the capacity—and agreeing to be accountable—to write, edit, and review this paper, we are facilitating broader discussions about inclusive language in biomedical and health informatics research. Through this paper, we strive to engage diverse opinions and encourage the sharing and learning of new perspectives.