11:35 - 11:55 amSaturday, September 28
LK 130
An ePatient manifesto: prescribing participatory medicine to improve health care
LK 130
An ePatient manifesto: prescribing participatory medicine to improve health care
Co-Founder, Emily's Entourage
Drawing on my experience as an ePatient with advanced Cystic Fibrosis (CF), I examine the moral, social, political and economic justifications for a widespread shift to participatory medicine in health... Read more

Description

Drawing on my experience as an ePatient with advanced Cystic Fibrosis (CF), I examine the moral, social, political and economic justifications for a widespread shift to participatory medicine in health care. Characterized by unsustainable cost increases and poor outcomes, the current health care environment is broken. Furthermore, the rapidly evolving digital landscape is fundamentally changing the way people access and interact with health information and each other. The combination of a broken health care system and new and changing digital landscape urgently call for a paradigm shift in the delivery of health care in the United States. In my presentation, I walk the audience through my experience as an active participant in the online CF community, born from unique cross infection risks, and an engaged and informed partner in my own health and care. I use these experiences to outline the benefits of participatory medicine and patient empowerment on a personal and health system level to demonstrate why participatory medicine is an essential part of the solution for fixing the health care system and advancing science. I conclude with a list of what participatory medicine looks like and does from the perspective of a bioethicist, health care marketer, fundraiser and above all, as an empowered patient.

Emily Kramer-Golinkoff wears many hats. She’s co-founder of Emily's Entourage, a nonprofit organization that raises funds and awareness to cure Cystic Fibrosis; she works in healthcare marketing at an academic medical center; and she is an active ePatient with advanced stage Cystic Fibrosis.

In 2011, Emily was named AbbVie’s Thriving Graduate Scholar and awarded a $19,000 scholarship. This spring, she served on the Communications Task Force of the Cystic Fibrosis Foundation’s strategic planning process.

Emily recently earned a master’s degree in bioethics and a certification in clinical ethics mediation from the University of Pennsylvania, where she also received her undergraduate degree.

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