I was invited to Washington DC to participate as a panelist to discuss patient engagement in App testing during the ONC’s Blue Button challenge. It was thrilling to share (briefly) Alexis’ story and our journey – and it is truly important for me to share with others Alexis’ experience so that they are inspired to create new Apps and technology that help us care for Alexis better. I said on stage “I have been Alexis’ blue button for the past 7 years and it’s truly exhausting” – I’ve been the person aggregating Alexis’ information and sharing it. I’ve been the one to keep the latest information on her medical conditions and bring it up with doctors who might need to know that information. It’s a ‘weighty’ job to be the glue for 45+ people on Alexis’ “team”.
Enjoy!
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