Q4: My youngest has NF1. Its a genetic disorder. He's 22, not in school and not employed. Our state opts out of Medicaid. He cant even get genetic check ups. This is wrong. #PatientsHavePower #WTFix

I'm IN! #PatientsHavePower w/ #WTFix- Wont you join us?

Its many things, right? Gaining entry into the health care system.
access to data/sites of care where patients can receive information and
finding providers who meet the needs of individual patients #patientshavepower #WTFix

A1: With my Mom it was gaining access to needed services and coordinating care. With my daughter, Cancer Survivor, it was gaining access to records #patientshavepower #WTFix

A2: SO many ways. Coordination of care bw providers, ED, Hosp, LTC. Portal access to ALL Labs by DOS, Access to MDs to explain scans & prognosis (this changes when you're on gov subsidy). Alignment to all sys and services #PatientsHavePower #WTFix

Q2: With my neighbors Mom, she could not speak loud enough for the call system in Hosp. It could have been improved w/ a camera to SEE her, or a better more accurate call sys, even CHECKING IN on her. #PatientsHavePower #WTFix

A3: Ive also heard of "online rounding" for new parents or parents of infants in the NICU. If the parent goes home to catch a few hrs of sleep, they can log into the MD's rounds at any time #patientshavepower #WTFix