4:05 - 4:10 pmSaturday, September 28
Plenary Hall
The Networked Patient: A Collaborative Approach to Resuscitating Healthcare
Plenary Hall
The Networked Patient: A Collaborative Approach to Resuscitating Healthcare
Co-Founder, Emily's Entourage
In an ignite talk, the participant is given five minutes to speak about their ideas and personal or professional passions, to "ignite" the audience on a subject, i.e. to generate awareness and to stimulate... Read more

Description

In an ignite talk, the participant is given five minutes to speak about their ideas and personal or professional passions, to "ignite" the audience on a subject, i.e. to generate awareness and to stimulate thought and action on the subjects presented.

About the speaker

Over the past 4 years, I’ve become an active participant in the online Cystic Fibrosis (CF) community. Spanning multiple social media channels, including disease-specific forums, blogs and Facebook, the community has thrived largely because people with CF are discouraged from being together due to cross infection risks that exist exclusively within the CF population, and because as CF progresses, people become increasingly home-bound. The digital space is the only place we can safely connect with each other, making it both a refuge and a lifeline.

Full immersion in the online community has been a gradual process for me. I’m at a place now where I cannot imagine life without the friendships I have made online and the wealth of invaluable information and support I get from the CF community every single day. In addition, in 2011, my family and I co-founded Emily’s Entourage, a nonprofit organization that has raised over half a million dollars to fund Cystic Fibrosis research by leveraging the power of virtual and “in-real-life” communities. I also recently served as the only person with CF on a communications team as part of the national CF Foundation’s five-year strategic planning process, which allowed me to shed light on the vibrancy of the online CF community and advocate for more robust digital engagement.

As an ePatient with advanced CF and CF-related Diabetes, I am pleased to report that my healthcare is working. In my role as an active ePatient, I’m much more than an expert at living with CF and an active participant in CF social networks. I’m a researcher, fundraiser, communicator, self-tracker and regular 28-year-old trying desperately to live as fully and productively as possible.

On my multi-disciplinary health care team, I am an essential player and I’m treated as such by every team member. I am one of the lucky ones, and that’s precisely the problem. I know because I’ve been on the other side. I’ve experienced what happens when patients are not a part of the health care team, when their voices are quieted and their opinions and goals are ignored.

I’m on a mission to use my experience to help make healthcare better—for everyone. I envision a healthcare system where my current situation is the norm, not the exception. Where patients, especially those with chronic illness, are encouraged to serve as partners in care and research. That partnership requires mutual respect, engagement, accountability, and collaboration.

Getting there requires a completely participatory approach to healthcare. I want to share my experience as a testament to its potential and I cannot think of a better place to do that than at Medicine X. I eagerly look forward to connecting with other ePatients who share my commitment to changing health care by advancing the concept of participatory medicine. I hope to learn from their experiences, collectively brainstorm, be inspired, and find new and exciting ways to work together to fervently add momentum to the participatory medicine movement.

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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