Inclusive, Respectful, & Equitable Language for Health Researchers

In 2021, STOREE student researchers worked in collaboration with the Making Research Accessible Initiative (MRAi) to explore language representation in the Downtown Eastside Research Access Portal (DTES RAP) collection.

Language representation refers to the terms used to describe items in a collection—like their titles, descriptions, and the keywords used to describe them for indexing and retrieval. The DTES RAP hosts academic and community-based research materials focused on the DTES community, spanning 18 topics from Law and Legal Aid to Health and Wellbeing. The student team found that items in the DTES RAP can include language that is harmful to DTES communities—particularly research articles that have been catalogued using controlled vocabularies like the Library of Congress Subject Headings (LCSH) or Medical Subject Headings (MeSH), which have historically featured biased language that may perpetuate harm.

To improve language representation, the student researchers investigated community-preferred terminologies through consultations with university and community researchers and library workers to inform a new, evidence-based, local thesaurus (a type of controlled vocabulary). Community-preferred language prioritizes person-first, humanizing, and empathetic terms that reflect the place-based nature of the DTES RAP and broader MRAi. This work culminated in three suggested strategies for researchers:

  1. Be aware of place-based, organizational, and community-generated alternative vocabularies and advocacy efforts.

There are many resources that contest standardized and institutional language, but it’s important to be aware that certain terms may require local community consultation to better understand how to use them respectfully. There are some resources linked at the end of this blog post as a starting point for learning about alternative vocabularies.

  1. Be conscious of the way you think about and use language in your work.

Use person-first, non-stigmatizing, consistent, and biomedically accurate language to describe your work. A common example of problematic language in standardized subject headings are the terms “drug addiction” and “drug addicts;” their recommended alternatives in the DTES RAP are “substance use disorder” and “people who use drugs (PWUD).”

Beginning with “people who—” literally puts the person first and emphasizes the whole individual rather than their condition. Why does this matter? Evidence suggests that pejorative language may lead to implicit bias that can compromise medical care and patients’ self-efficacy. Using person-first language can help reduce stigma, reflect medical problems (not moral failings), contribute to improved recovery and quality of medical care, and, most importantly, respect the people these terms refer to.

  1. Be aware of the choices available to you when submitting your work for publication or dissemination, and of the factors that may impact those choices.

When considering publication venues like academic journals, it’s important to understand how you can describe your work. Some journals will ask you to supply your own keywords—this means you can enter community-preferred terms (see our list of resources below for a starting point). Others will ask you to select keywords from an existing source, like the MeSH controlled vocabulary. In these cases, knowing what terms are preferred is important so you can avoid stigmatizing and harmful language where possible.

It’s also important to note that some journals and databases will still index your work using harmful language. The more that we use accurate, person-first language in the content of our work and author-supplied keywords, the more those terms will be indexed, reducing the prevalence of undesirable terms over time.

These three strategies have been summarized in an infographic. We encourage you to download a copy to refer to during the submission and publication process, and to help us spread the word!

Want to learn more?

  • Read Sarah’s blog post about creating the thesaurus.
  • Visit the DTES RAP.
  • Check out some of the community-generated alternative vocabularies and advocacy efforts that informed this work:

Ally March. “Indigenous Ally Toolkit.”

HealthPartners. “Mental illnesses: Terms to use. Terms to avoid.”

Homeless Hub. “Prostituted words: Time for a new style guide.”

Homeless Hub. “Homelessness Glossary.”

Homosaurus: An International LGBTQ+ Linked Data Vocabulary

Joint United Nations Programme on HIV/AIDS. UNAIDS Terminology Guidelines.

Recovery Research Institute. “Addictionary.”

Trans Metadata Collective

United Nations. “Disability-Inclusive Language Guidelines.”