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Inclusive Language Practices for PCORI-Funded Draft Final Research Reports
Last Updated Friday, June 27, 2024
■ Background
Why We Need Inclusive Language Guidance: Origin Editorial recognizes the need to continually work to ensure that the language used in our scholarly publications is inclusive and free from bias or of limited¹ bias. Inclusive language is also referred to as bias-free language and is language that avoids or minimizes¹ exclusion or alienation of people because of disability, education level, gender identity, race, socioeconomic status, or any other factor². According to the Linguistic Society of America, the goal of inclusive language is to acknowledge diversity, convey respect to all people, be sensitive to differences, and promote equal
opportunities³. Over the past 7 years, there has been renewed interest in improving inclusive scholarly communication, and several organizations and scholarly publishing societies such as C4DISC – the Coalition for Diversity and Inclusion in Scholarly Communication, the American Medical Association (AMA), the American Psychological Association (APA), and the American Chemical Society (ACS) have led these efforts.
There are several reasons for improving the inclusivity of scholarly communication. These include improving accuracy in communication by respecting the way people want to be described, helping writers and editors notice implicit/unconscious bias that may otherwise go unchecked, and expanding the reach of a publication to a wider audience². One way to respect the way people want to be described is by using person-first language. “Person-first language is a way to emphasize the person and view the disorder, disease, condition, or disability as only one part of the whole person.”⁴ Describe what the person “has” rather than what the person “is.”⁴ Person-first language avoids using labels or adjectives to define someone, e.g., a person with diabetes not a diabetic; or person with cancer not cancer patient; or a person with bipolar disorder not a person who is bipolar.”⁴
Origin Editorial recommends using the report produced by the PCORI Advisory Panel on Patient Engagement in March 2021- “Equity & Inclusion Guiding Engagement Principles”⁵-as well as the Inclusive Language Section (11.12) of the AMA Manual of Style 11th edition ⁴, which is currently used by the copy editors responsible for final proofing of PCORl-funded Final
Research Reports. As such, Origin Editorial developed this current guidance statement, which is largely adapted from the AMA style manual, to provide the core principles that Associate Editors, peer reviewers, and awardees/authors should consider when writing and reviewing PCORl -funded Draft Final Research Reports.
■ Guidance for Authors, Peer Reviewers, and Editors
This guidance statement should not be considered as an official PCORI statement. All recommendations and content in this guidance statement is the work of Origin Editorial or adapted from the identified scholarly publishing societies and resources cited (e.g., the AMA) and does not necessarily represent the views of PCORI, its Board of Governors, or its Methodology Committee. The following core principles regarding inclusive language should be considered when writing, reviewing, and editing PCORl-funded Draft Final Research Reports:
- Person-first language is preferred. Terms meant to describe a group of people should be modifiers rather than nouns, such as “Black people” instead of “Blacks” and “people with diabetes” rather than “diabetics.”
- Terms used to describe a community or community partners should ideally come from a representative sample of the community. The research team should confirm that the community represented in the study approves of the terminology used to describe If a representative sample is not available, authors should use the terminology preferred by the community partners and explain the source of the term.
- Explain potentially offensive or unusual terminology describing groups of If the community partners prefer a term to describe them or their region that might offend some people, explain the use of the term early in the report. The term “Black Belt” is an example of a phrase which may at first glance present a stumbling block to readers but is appropriate to use with detailed contextual explanation as was presented in page 7, paragraph 2 of the Background section of this report.
■ Person-First versus Identity-First Language Guidance
Although the AMA recommends the use of person -first language, the National Institutes of Health indicates that members of some communities may prefer the use of identity-first language. Identity-first language is a term that refers to wording about a person that leads with a description of them in the context of a disability, medical conditions (including mental health conditions), or other physical or cognitive difference⁷ ̓ ⁸. Examples of communities with members who may prefer identity-first language include deaf people and autistic adults (a subset in the neurodiversity paradigm). Some experts suggest defaulting to person-first language when writing about children with autism⁷. For example, in section 11.12.6 of the 11th edition of the AMA Style Guide, note that adjectival identity-first language is used to describe blind people and deaf people in contrast with other groups of people mentioned in the table such as persons with diabetes.
Whenever there is still uncertainty regarding whether to use person-first or identity-first language, after consulting the AMA style guide, we refer to core principles 2 and 3 listed above and direct authors to defer to the preference of the research participants with appropriate explanation of the use of the terminology or language chosen.
References and Notes
- Given that the work of ensuring inclusivity in the language used in scholarly publishing is ongoing, the terms “limited bias” and “minimizes” are used here to reflect this status of continuous
- American Chemical Society: American Chemical Society lnclusivity Style Guide.
- The Linguistic Society of America: Guidelines for Inclusive Language, 2016
- The National Institutes of Health: Person-first and Destigmatizing Language, 2023
- PCORI Advisory Panel on Patient Engagement, March 2021: Equity & Inclusion Guiding Engagement Principles
- AMA Manual of Style, 11th edition: A Guide for Authors and Editors, Section 11.12 on Inclusive Language, 2020.
- The National Institutes of Health: Writing Respectfully: Person-first and Identity –first Language, 2023
- Person-first Language vs Identity-first Language: Which Should You Use? com, 2021 .
- For specific terminology to refer to community partners involved in a study, see PCORl’s Stakeholders.
- The Royal Society of Chemistry Framework for Action in Scientific Publishing: Improving Inclusion and Diversity in the Chemical Sciences Joint Commitment for Action on Inclusion and Diversity in Scholarly Publishing,