CTSC Provides Perspective for Nothing About Us Without Us: Centering the Voices of People with Lived Experiences Panel
The American Hospital Association Accelerating Health Equity Conference took place at the Hilton Cleveland Downtown from May 10-12, 2022. An in-person event, the floors of the Hilton were buzzing with health equity champions–local and national–eager to elevate and innovate in the health equity space.
Gelise Thomas, Assistant Director of Strategic DEI & Health Disparities at Case Western Reserve University, Clinical and Translational Science Collaborative, discussed past experiences and projects she has been involved in that benefited or would have benefited from community voices throughout the process. Thomas highlighted the launch of the Clinical Research Community Advisory Board at University Hospitals Clinical Research Center (CRC) and production of communication tools for caregivers and patients to facilitate discussion about clinical research that doesn’t ordinarily occur.
The Clinical Research Community Advisory Board (CAB) launched in fall 2020. Recruiting almost exclusively digitally albeit the digital divide, we amassed approximately 20 members, primarily doubling as University Hospitals caregivers and community members, and around five individuals who had participated in clinical trials or supported a family member in a clinical trial. Meeting monthly via Zoom, CAB members provided feedback on existing or proposed projects and learned about various facets of the CRC.
Focusing on one communication tool that was created for patients, How to Have a Conversation About Clinical Research with Your Doctor, we realized in hindsight that the tool had not been vetted by potential users nor the CAB before publication. Understanding and following through with where, when, and how community voices should fall in the project process is paramount to respecting all stakeholders and meeting expectations for involvement.
Key themes from all panelists included:
- Engaging patient-mentors and the importance of adequate compensation for lived experience expertise;
- Having conversations with the intent of listening to and learning from stories;
- Elevating compassionate curiosity in healthcare.
The panel was complete with voices from Aly Luna, a speaker, presenter, and family & peer support specialist with lived experience regarding medically complex children, and J. Greg Merritt, PhD, Founder and CEO of Patient is Partner. Luna spoke about how her experience advocating for her children in various medical systems helped influence and inspire her involvement in patient advocacy work. She also shared how she appreciated one instance of involvement where everyone around the table was referred to by their first name instead of honorifics to level the playing field and set the tone that everyone has a valuable perspective. Merritt, whose cardiac arrest experience and second chance at life is the fuel for his work, advocated for patient mentors for caregivers to improve the patient experience.