Empowering patients and patient communities through in-person experiences.

Elizabeth Presson Lizp@oticonmedical.com

Abstract

“It wasn’t an easy transition when we adopted Brody. Not only did we not know how to deal with his hearing loss, he didn’t warm up to us, or anyone. I felt helpless and although finding this group online gave me guidance, this weekend being here with all of you, I feel like I’ve really met my child for the first time.” That night, we all watched as three-year-old Brody who had said his first words since coming to the United States over six months prior, owned the dance floor. His parents watched in awe, their mouths nearly hanging to the floor. Brody’s mother, Dayla, had become a part of an online community for parents of children with hearing loss. Through the group, she learned of the advocacy event for adults, children, and parents of children with hearing loss that she says “gave Brody life.” As Brody’s experience shows us, some things can only happen offline, in real life. 

In this session, I’ll share real programs and projects that exhibit how digital experiences can be transformed into meaningful communities when individuals are brought together in person and how we can create more of these experiences with learnings collected in bringing the programs and projects to life. Here are two examples. The Hero’s Journey is a crowd-sourced art project with the mission of honoring participants in clinical trials. Conceived by Lilly’s Clinical Innovation team and inspired by ePatient conversations, a total of 1,000 decorated wooden bricks designed by community members are contributed to three wooden sculptures created by artist John Magnan. I’ll share images and video of the project, illustrating how it has brought communities together and helped promote understanding and awareness around clinical trials. Another example of transforming a digital experience into a meaningful, in-person patient experience is Oticon Medical’s annual advocacy event that Brody and his mother, Dayla, participated in. In each example, we’ll highlight how these once digital experiences, now transformed into offline experiences, bring communities together and make a lasting impact on lives like young Brody’s. We’ll also share the elements of offline experience that make the magic of community connection happen. After sharing powerful examples and information on how the experiences came to life, we'll take a version of The Hero's Journey project into one of the main areas of the conference hall and illustrate the power of the Medicine X community with our own in-person experience. We’ll project a rendering of one of The Hero's Journey sculptures, with blank spaces for attendees to add their own “brick” (post-it) that represents an in-person experience that has impacted them while at Medicine X to encourage conversation and connection.
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