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524 How Can I Provide My Patient Insights in a Nontraditional Advocacy Role?
- Max Kerensky, Joshua C. Doloff, Nitish Thakor, Nicholas Theodore, Amir Manbachi
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- Journal:
- Journal of Clinical and Translational Science / Volume 6 / Issue s1 / April 2022
- Published online by Cambridge University Press:
- 19 April 2022, p. 109
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OBJECTIVES/GOALS: The goal of our multi-institutional team is in our name Holistic Electrical, ultrasonic and Physiological Interventions Unburdening those with Spinal cord injury†(HEPIUS) Lab. Officially, I am a Ph.D. researcher, but the team has empowered me to share insights from being a former spinal cord patient myself – creating a more direct feedback loop. METHODS/STUDY POPULATION: Human-centered design is a method growing in popularity due to its impact on outcomes. Any translational project aspires to utilize some level of patient perspective. Our team has taken several initiatives to make this a part of our core. The team has a dedicated advisor who suffered a spinal cord injury and underwent the current standard of care. There are also non-traditional and unofficial advocates (like myself) on the team. Although I am fully recovered today without any symptoms from a different spinal cord complication, the team equips me with the time and support needed to share my experiences in clinic. The team gives me the opportunity to champion for the most appropriate approaches during official meetings and periodically in the lab whenever a question arises. RESULTS/ANTICIPATED RESULTS: In this poster we aim to discuss the following points: 1.) Team Culture: Those with patient insights will only share if there is an established healthy culture. 2.) Privacy: Just because someone advocates on the behalf of patients does not mean that they need to divulge personal information 3.) Workflow Structure: Sharing patient insight only reaches as far as the organization permits. Thankfully, my team is open to member perspectives and has benefited from several insights already 4.) The art of listening: Patient insights should be listened to and treated with respect, but not as an undebatable suggestion 5.) Rewarding aspects: Sharing patient insights is a very rewarding experience if you feel comfortable enough to share. DISCUSSION/SIGNIFICANCE: Translational teams often rely on statistics, one-time patient interviews, or dedicated individuals in an advocacy role to help guide the project. This poster is intended to highlight some new ways to practice engagement of patient perspectives, while introducing the intricacies of fostering healthy cultures which promote these voices.
216 An Example for Establishing a Clinically Translational Innovation Lab at a University Setting
- Max Kerensky, Joshua C Doloff, Nitish Thakor, Nicholas Theodore, Amir Manbachi
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- Journal:
- Journal of Clinical and Translational Science / Volume 6 / Issue s1 / April 2022
- Published online by Cambridge University Press:
- 19 April 2022, p. 35
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- Article
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OBJECTIVES/GOALS: This poster shares a case study on how a group at The Johns Hopkins University formed a translational lab missioned to reinvent currently existing treatments for acute spinal cord injuries, implanting in humans within a five-year window. The poster showcases how a project funded by the Defense Advanced Research Projects Agency has been implemented. METHODS/STUDY POPULATION: The translational team; Holistic Electrical; ultrasonic and Physiological Interventions Unburdening those with Spinal cord injury• (HEPIUS) Lab is composed of many parts as listed below: neurosurgeons; engineers; radiologists; public health specialists; statisticians; patient advocates; ethicists; sonographers; researchers; academic collaborators; and specialized industry partners. Sometimes physically separated; the team has videoconferencing carts across locations to stay connected at every step in the process. The lab facilities were organized with several key facets in mind: research and development (R&D); prototyping; fabrication; verification; and validation (V&V); animal model testing; cadaveric testing accessibility; mock operating room for simulations; and collaboration hubs. RESULTS/ANTICIPATED RESULTS: Due to communications with the US Food and Drug Administration (FDA), DARPA, patient advocates, ethicists, internal review boards, and other bodies, the team has a clear path towards clinical translation. The team has the following stages in progress or scheduled: manufacturing devices, benchtop testing, rat and pig models, biocompatibility testing, cadaveric testing, and clinical use. The lab space was designed to achieve these core functions. For rapid, in-house manufacturing, the lab has unique capabilities including 3D metal printing. For experiments, industry collaborations and equipment acquisitions enable the highest quality research. These technologies are assembled into diagnostic, therapeutic, testing, and manufacturing hubs to drive real change in the lives of many; the patient comes first. DISCUSSION/SIGNIFICANCE: This laboratory, team, and system of operation is aimed to enable novel practices for the clinical translation of spinal cord medical solutions. For researchers interested in launching their own translational work, this poster may serve as a reference, example, and inspiration for similar hopeful university-centered hubs.