Inclusive and Preferred Language for Patient and Research Participant Communication – Selected Resources 

Health and science communication best practices include developing communication that is respectful, inclusive, and accessible to your audience. Here are some resources to support your regular communication with patients and research participants using inclusive and preferred language.

The Centers for Disease Control and Prevention’s Inclusive Communication Principles include key principles for general communication and preferred terms for select population groups and communities. This resource includes suggestions for communicating about immigration status, mental health, gender identity, and more. 

The National Institutes of Health regularly updates the Person-first and Destigmatizing Language Style Guide, providing options for person-first and identify-first language. They suggest asking the community you’re working with what their preferences are, as they can vary. If preferences can’t be determined, default to using person-first language.

The American Chemical Society’s Inclusivity Style Guide is comprehensive and includes general guidelines for communicating in ways that respect diversity. For instance, ask people how they want to be described and respect that language. The guide also contains guidelines for communicating about specific topics such as age, weight, and socioeconomic status.  

The American Psychological Association’s section on bias-free language encourages writers to use language free of bias and demeaning attitudes. Of possible interest, this guide includes a section about respectful communication about participation in research

In addition to general inclusive language guides, many organizations have guides dedicated to specific communities, such as the LGBTQIA+ community. A few of these guides include:

The Reframing Aging Initiative’s Communication Best Practices Guide is a comprehensive resource for respectful communication about aging. It provides research-based rationales for the practices and language to avoid alongside better alternatives.   

Guidelines: How To Write About People with Disabilities from the University of Kansas offers suggestions on objective, respectful disability terminology. The guidelines were established based on surveys of disability organizations and individuals with disabilities.

The Multi-Regional Clinical Trials Center (MRCT) of Brigham and Women’s Hospital and Harvard has created an LGBTQIA+ and Inclusive Language Checklist. The checklist includes guidance such as using gender-neutral language whenever possible and is a handy reference when creating health-related materials. 

In addition to these resources, here are a few general considerations to keep in mind: 

  • Learn about preferences directly from your audience. If that’s not possible, reach out to family members, organizations, or groups that work closely with your audience. They can help you identify respectful and preferred language to use. You can also contact the Center for Community Health Partnership & Research to host a community engagement studio1 and receive input on your project.
  • Language is constantly evolving. Today’s preferred terms might not be tomorrow’s, so stay connected to your audience. And remember, individuals might have different preferences.  
  • We all make mistakes. The MRCT suggests you acknowledge your mistakes each time and apologize. Then, continue to try to use respectful language moving forward.

  1. A Community Engagement (CE) Studio is a 2-hour facilitated session that provides a research team with quick and valuable community or patient input. A CE Studio may be helpful at different stages of project development and implementation. To learn more about the CE studio process, please contact Hilary Broughton at ↩︎