How is precision medicine is changing the role of the ePatient?

Andrea Downing andrea@bravebosom.com
Steven Keating stevejkeating@gmail.com
Emily Kramer-Golinkoff emilykg1@gmail.com
Claudia Williams chw7985@gmail.com
Matthew Might might@cs.utah.edu

Abstract

On January 30th, President Obama announced a new Precision Medicine Initiative to revolutionize how we treat and prevent disease.  The role of the ePatient, and patient-centered design is more important than ever.  This panel discussion will look at ways in which this initiative will change precision medicine, and how ePatients can make an impact.  We will explore the following:
  • Why are concepts of equal access to data important?  Why does every ePatient need to understand that access to our own genomic data should be our right?

  • How are we shifting from a paradigm where the researcher pulls data from patients, to a ‘bring your own genomes’ model where patients push data back to researchers?

  • How can we bridge the data literacy gap in patient communities, to ensure that everyone understands the informed consent process, and what to expect from researchers?  

  • We’ll discuss share stories of how individual ePatients are making an impact within their own communities through genetic data sharing can accelerate the pace of drug discovery. 


Panelists:

Andrea Downing (Moderator):

Andrea Downing is the founder of an ePatient site called Brave Bosom.  She co-organized the rally at the steps of the Supreme Court as oral arguments were heard in Association of Molecular Pathology vs. Myriad Genetics, the landmark case which overturned the patents on BRCA1 and BRCA2.  In February this year, Andrea presented to the NIH as part of the Participant Engagement working group for the NIH workshop on the Precision Medicine Initiative.  Andrea is passionate about data sharing within the BRCA community, legitimizing the role of the ePatient in design of technology.

Matt Might:

Dr. Might is the father of the first N-Glycanase (NGLY1) deficient patient ever discovered, and is now President of NGLY1.org, a foundation dedicated to tackling the disorder.  Matt is part of the working group that presented recommendations to Francis Collins at the NIH.  As a rare disease parent, he counsels families in understanding how to understand the science of rare mutations, and and how partner with scientists to accelerate the pace of drug discovery.

Steven Keating: 

Steven Keating is a doctoral candidate at the MIT Media Lab who is developing novel platforms for 3D printing and synthetic biological fabrication. Curiosity drives his research and also saved his life through the accidental discovery of a baseball-sized cancerous brain tumor found in a voluntary academic scan. With his tumor successfully removed through awake brain surgery in 2014, Steven is an advocate for open patient data and curiosity. He has been actively developing new 3D printing techniques for patient data, speaking on the impact of open data for shared support/healing, and exploring methods for patient-centric data systems. Data and more details can be found at http://stevenkeating.info

Emily Kramer-Golinkoff:

As the founder of Emily’s Entourage, Emily is creating an innovative network of Cystic Fibrosis families who are building a drug discovery roadmap for rare CF mutations.  She is working with scientists like Dr. Allan Berkman UCSF to accelerate the pace of drug discovery for her own CF mutation.




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