Plain Language

By Andrew Buck, Christine Brown, Braden Gertz, and Susan Havercamp

The Can You Hear Us Now? (go.osu.edu/rrtc) project is transforming the way mental health studies are done by including adults with intellectual disability (ID) as research participants and partners. Rooted in the belief that research must be led by those who are affected by it, our project uses a learning collaborative model to engage community members with ID as paid consultants and equal team members alongside researchers with and without disabilities.

This cornerstone is a key strategy that shapes our studies to be more inclusive and impactful, especially for adults with ID. The partnership model ensures that the research process is accessible and the outcomes are meaningful to the communities it serves.

Members of the OSU Nisonger Learning Collaborative

Our project integrates the leadership and advocacy of research partners with lived disability experience. Their input guides how we engage in research and clearly communicate with members of the disability community across our health studies, from recruitment to results.

The Basics

Can You Hear Us Now? is a community‑engaged research project aimed at improving health outcomes for adults with ID. Historically, individuals with ID have been excluded from research, particularly in mental health studies. Our project addresses this problem by asking adults with ID to tell us about their own health. We include individuals with ID as research participants and as core members of the research team.

• Participants. We focus on listening to adults with ID to learn about their health and well-being through adapted surveys and modified interviews, which amplifies authentic experience alongside health information collected from a support person or guardian. We prioritize the perspective of adults with ID to gain a deeper understanding of health and wellness issues impacting individuals, and collectively, the diverse ID community.
• Partners. A guiding principle of our approach is the disability rights motto, “Nothing about us without us.” We believe that individuals with disabilities are experts on their health and should play an integral role in the research that affects them. To achieve this, we recruit and engage individuals with lived disability experience, including some with technical training and some with experience in mental health systems.

The Learning Collaborative Model: REEP & DEEP

The heart of our project is a learning collaborative model that brings together two groups:

1. The Research Experience Expert Panel (REEP): A national team of leaders in disability research and policy, including individuals with developmental disabilities, who provide technical expertise for study design, data analysis, and academic dissemination through publications and presentations.
2. The Disability Experience Expert Panel (DEEP): A state team of adults with intellectual and other developmental disabilities (IDD), including individuals with co-occurring mental health conditions, who bring their personal expertise to the research process. They advise on grant applications and study protocols, co-create measures and interventions, and help translate journal articles into clear-language products.

Our learning collaborative values and prioritizes equitable contributions from all team members to meet the project’s goals. The panels meet regularly to discuss progress and plan next steps, review data and think about what it means, and develop strategies for sharing what is learned through the studies. Through ongoing teamwork, researchers with academic training gain invaluable insight into the preferences and needs of individuals with ID while community partners gain professional skills and confidence as co-researchers.

Clear Language as a Core Research Strategy

Inclusion goes beyond just involving individuals with ID as research participants to collect data. Inclusive research is intentionally and proactively guided by the expertise of community partners. It means making the research process welcoming and the findings understandable and usable. For this reason, we have made clear language a core part of our approach. Clear language refers to information that avoids technical jargon, uses common words and visual supports, is well-organized with headers and bullets, and is shared in ways that enhance public access and engagement.

For us, clear language is essential, not only to share deliverables but also to actively involve partners at every stage of research (e.g., defining relevant questions, designing study steps and materials, modifying data collection tools, discussing what the data means, and sharing what we find). By emphasizing clear language, we continually strive to make research more inclusive for participants while empowering our partners to make substantial contributions to the project.

As DEEP co-chairs emphasized, “clear-language summaries matter because people may not like reading long paragraphs,” and “making stuff in clear language makes people be able to stay engaged and understand us better.” They advise researchers to “use clear language,” including videos, and “get input from people with ID. Ask them to be part of the product development because they know what people like.”

Knowledge Translation Process

A key feature of our project is the back-and-forth knowledge translation process between REEP and DEEP members, which takes technical content or information published in academic journals and turns it into clear-language products for a wider audience. This is especially important for those who stand to benefit the most: adults with ID, their families, and mental health professionals.

REEP authors join monthly DEEP meetings to talk about papers and gather DEEP input on the most important information, what is not clear, what words might work better, and what types of visual supports to use.

DEEP feedback ensures that summaries are clear, and REEP reviewers check the translation for accuracy and completeness. The collaborative and iterative process results in research findings that are more user-friendly and actionable while communicating outcomes in a variety of formats for diverse stakeholder groups. Finalized products are shared through social media and published on the project website (rrtcnisonger.org/what-we-do/what-have-we-learned-so-far/)

Clear-Language Products

The project has produced a wide range of clear-language products, including:

• Clear-Language Summaries: Academic articles are paired with supplemental summaries written in plain language and graphically organized to break down key findings and emphasize practical takeaways.
• Multimedia Tools: In addition to written summaries, we create videos, podcasts, and social media campaign kits to summarize key findings:
  • The clear-language summary of our project’s published qualitative case study was further translated into a brief video and a video podcast featuring an academic researcher and a DEEP Co-Chair.
  • A social media kit shares results from a focus group study with clinicians and clients with ID. #TherapyTogether combines images, tips, quotes, and resource links into short posts that are shared over several weeks.
  • We also developed practical tools for mental health clinicians and clients with ID to support the implementation of evidence‑based practices and promote patient-provider teamwork. These tools include summaries, checklists, videos, and interactive worksheets.
  • DEEP helped adapt educational materials for an online group psychotherapy intervention for participants with ID and co-occurring anxiety disorders. Members co-created videos to teach basic therapy skills (e.g., progressive muscle relaxation for wheelchair users).

Teams hold initial meetings to discuss their target audience or key stakeholder groups, list big ideas and main points, and consider the types of products they want to share. Ongoing communication and requests for feedback happen via emails, online surveys, or group chats. They employ a wide range of generative artificial intelligence and content creation software that may be leveraged to strategize multimodal toolkits and draft clear summaries, scripts, and visual supports.

The Big Picture

Our project has taught us valuable lessons about inclusive research. We’ve learned that clear language is more than just a dissemination strategy; it’s a research method. By involving individuals with ID in every step of the process, we conduct research that aligns with the community’s preferences and addresses their needs. Additionally, our knowledge translation process has demonstrated the power of co‑production. Each cycle of feedback, from REEP to DEEP and back, slowly molds academic rigor into applicable tools.

The success of Can You Hear Us Now? demonstrates the value of integrating clear language into inclusive research methods. Our approach has implications for all fields but emphasizes the inclusion of individuals with disabilities in all studies. We hope to inspire more researchers to adopt clear language and knowledge translation as a core practice and to collaborate more closely with the communities they hope to help through their research. We also advocate for more funding opportunities that integrate clear language and disability community inclusion as competitive priorities and general expectations.

The Power of Language

Can You Hear Us Now? is a model for inclusive and impactful research. By embracing clear language and co‑creating the project’s design and deliverables with community partners, we are advancing the way research is done, but more importantly, we are sharing clear strategies for clinicians to improve mental health therapy for clients with ID through teamwork. When everyone is heard, we can build a better society together.