Why Research Often Fails the Deaf Community
Have you ever been invited to shape the research that impacts your life? For many deaf people, the answer is “rarely,” and that’s a problem. Barriers like inaccessible materials, complex jargon, and lack of ASL exclude us from participating in research.
But it doesn’t have to be this way. Our Deaf Patient Coalition is pushing for change:
📝 Prioritizing accessible materials and ASL translations
🤝 Including patients and stakeholders in the research process, from start to end
📚 Recommending training resources and research priorities designed with YOU in mind
What would make research more accessible for you?
#DeafResearch #HealthEquity #AccessibilityMatters.
#LearnFromDeafPeople #ASL #Deaf #AmericanSignLanguage #SignLanguage #DeafEcosystem #DeafAwareness #DeafCommunity #DeafPride #DeafCulture #DeafWellness #Communication #Health #ASLVideos #DeafHealth #PCORI
This update is provided as part of the “Building Capacity for Deaf American Sign Language Users in Virtual Healthcare PCOR/CER” project, which is funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (EACB-35309). The views presented in this work are solely the responsibility of the author and do not necessarily represent the views of PCORI.
To learn more about the project, visit: www.pcori.org/research-results/2024/building-capacity-deaf-american-sign-language-users-virtual-healthcare-pcorcer. For project updates, follow us on social media or sign up with your email at deafhealthaccess.org/sign-up.
Stay Informed in ASL: We’ve got you covered! Sign up with your email at deafhealthaccess.org/sign-up or follow us on social media for new and current health updates.
Transcript and Video Description
[Video Description: The post features a video thumbnail with a blue overlay. At the center, a text bubble reads “Why Research Often Fails the Deaf Community” in white text on a rose-colored background. In the video, Bee, a white, non-binary person with long, curly brown hair, stands in front of a forest green wall. A potted monstera plant is visible on the left. Bee is wearing a black top layered under a charcoal short-sleeve button-up shirt and maroon glasses.
Transcript: Let’s talk about why so many Deaf people are left out of research. When we ask deaf folks: Have you ever been asked to be part of the research process - from the questions themselves, to the process, to sharing results? And almost everyone says: Rarely. Or never. Especially not by researchers who are hearing. Often, Deaf participants are an afterthought - only contacted when someone needs last-minute accommodations. That’s not inclusion. Accessibility isn’t just about adding captions or interpreters. If something isn’t usable, it’s not accessible. Creating accessible materials takes time - and that needs to be built into research timelines, not added on later. There’s deep distrust. Many Deaf people - especially BIPOC and other minority communities - have faced generations of medical and academic harm. Seeing a researcher’s face, or someone who shares your background, can build trust. And finally: research takes emotional labor. Make sure compensation feels meaningful and respectful. If we want real inclusion, we need to rethink how we do research - with, not on, deaf communities. [The screen fades to show a thumbnail of a faded white background of a doctor holding hands with another individual] Deaf. Healthy. DeafHealth. Learn more at www.deafhealthaccess.org.]