Lost Voice: Addressing healthcare inefficiencies through patient equality

Lost Voice: Addressing healthcare inefficiencies through patient equality After attending the Healthcare Information Management Systems Society (HIMSS ) 2018 in Las Vegas in March, Christina Farr, the CNBC reporter who covers health and technology, tweeted I have one observation post-HIMSS, now that i'm back in SF. There was an elephant in the room, so I'll just say it. We'll all be patients and/or caregivers someday. So are we going to fix health care now, while we can, or continue to make $ through the current inefficiencies? — Christina Farr (@chrissyfarr) March 8, 2018 Defining patients Farr’s tweet [...]

Rare Disease and Social Media: Making Connections

Rare Disease and Social Media: Making Connections Being Alone and Disempowered Keeping illness, pain and suffering a secret for years is the reality for many people with rare diseases.  Now, on social media, they are writing about it, sharing the desperation and the hurt.  And they are finding each other in the process. Joy Aldrich kept her diagnosis of Charcot-Marie-Tooth a secret from everyone (including her physician) for 33 years.1  Dawn Nellor, a patient with pulmonary sarcoidosis, describes one reason for this, “The behavior of past appointments with physicians…have numbed me to their raised eyebrows and [...]