Centering Lived Experiences in Research Communication

Author: Ilana Cohen

Last month, I attended the Beyond Celiac Conference not for my research job or for academic purposes; rather, because the subject matter was relevant to me. I have been diagnosed with Celiac disease for the past 14 years, and I was curious to learn more about current research in the field.

At the conference, I repeatedly introduced myself, "I have Celiac. I also work in clinical research, but completely unrelated to this." Throughout the day, I learned about current clinical research trials, advances in studying biomarkers, and initiatives for children living with Celiac. I learned about research that could potentially affect my own health and future treatment, and I was able to share my lived experiences with professionals in the field. Through my personal experiences in the Celiac research world and my professional work in clinical research, I've developed an understanding of the importance of research communication outside of academia. Through these experiences, I've learned the critical importance of including patient populations in clinical research communication.

In my current professional clinical research position, I coordinate clinical trials for epilepsy treatment. My fellow team members and I often discuss barriers to recruitment that could be mitigated if the teams that originally designed the clinical trials considered patient feedback. Some teams do consider patient feedback when designing clinical trials—I know that specific trials ensure they include feedback from patient focus groups. Through the work that we do, I've been able to experience the importance of centering patient needs.

Many research conferences are extremely inaccessible. These events have high registration costs, cater to academic audiences, and may not provide accessible information. As a result, much of the information stays within academic networks. However, this Celiac conference was relatively financially accessible for the public. They also made information accessible in a way that I wish more research conferences would—they filmed every panel and are posting them on YouTube (with cost-free access), and provided panels for both academia and general population audiences.

I continue to focus my efforts in research spaces as a clinical research professional, and as a patient among the general population. Through these efforts, I've developed an understanding of research communication as a two-way road. Patients should be able to hear directly from research professionals, to learn field innovations and support further understanding of their condition and/or disease. These efforts would also support patients in building trust with research and medical professionals, which could lead to greater participation in clinical trials. This unique relationship would benefit both professionals and peers. When research communication pathways are established, research itself can be further informed by lived experiences.

In the future, I hope to see more research conferences increase their accessibility to include more diverse audiences, and center more people in voicing their firsthand experiences. I also hope to encourage all people interested in research to pursue topics they are passionate about, including among topics that are directly linked to their lived experiences. I know that stigma exists and can negatively impact people who pursue research among topics that are directly linked to these experiences. I believe that it is important to exercise caution if you are in this position to avoid bias; however, I think that we should encourage this passion among all people interested in research.

I encourage anyone reading this essay to feel pride in any lived experience that compelled them to pursue research, and to build communication pathways with people impacted by your work.

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