Voting Open on Blue Button Ideas!
I must admit, I’m a pretty savvy computer user – when I was a co-op in college, I actually would use two computers to keep up with the work I was doing.
But when I had Alexis, I became a ‘drowned rat’. What was I drowning from? Drowning from paper, drowning from coordinating schedules, drowning from keeping everyone on the same page. I had read the book “What to Expect” and they describe the series of doctor appointments a newborn will have. They did not describe the series of appointments that MY newborn would have. For Alexis’ 365 days, she spent 100 days in the hospital, she had 28 other doctor appointments and she had 150 therapy appointments. We had mountains of paperwork. We had in-patient summaries, discharge reports, discharge instructions, follow-up reports, prescriptions, therapy notes, therapy recommendations – we had it all.
It takes heroic efforts – and it doesn’t get easier. When ONC asked for ideas for Apps for Blue Button usage — I jumped at describing my pain-point:
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!
Vote to help all caregivers out there: http://bit.ly/16LqIm6
You can vote from each device 3 times. Thank you for your help, Catherine
P.S. Both ePatient Dave and Hugo Campos (fellow members of Society for Participatory Medicine) have submitted entries. I am honored to be in the running with such esteemed and worthy competitors. If you don’t know about ePatient Dave – see here and Hugo Campos — see here.