Dr Rose goes to Washington

drrosegoestoDCMany people know I’m capable of pulling a filibuster, but instead I’m going to do as asked and participate as a panelist for ONC Consumer Health IT Summit (@ONC_HealthIT) on September 16.  


I’m honored to be asked to participate and I’m eager to help share my experiences with more folks.  Alexis wouldn’t be here without the advances of medicine, but there are many aspects to her care that have been driven by her dad and me.  It will be exciting to be there – here’s how I got invited:

I worked on Blue Button Co-Design Challenge!  It’s not ever day that you can say 2nd place was a WINNER!

Here was my idea that I submitted that I received 493 votes….

Build me a Blue Button enabled tool that….

Manages my daughter’s chronic conditions, therapists, specialists, prescriptions and appointments. My daughter has defects in almost all organ systems and we see 18 different specialists, she has 6 different therapists, she has multitude of prescriptions and must-use medical equipment for breathing while she sleeps. We need a way to keep the 

hospital, her school team, her therapy team and us – all on the same page regarding her care. It takes heroic efforts now, but it could be greatly simplified!

Then, I participated in the testing and judging of the final submissions.



My participation on the panel will discuss this experience from a caregiver’s perspective. I’m looking forward to talking about Alexis’ complex medical journey and how we all must work together to make this easier.  We don’t have to drown in healthcare paperwork! (and hopefully not miss something crucial to the care of your loved one)


Posted on 09/03, in Pain Points, Reaching to Others and tagged , , . Bookmark the permalink. Leave a comment.

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