ePatient Bill of Rights: Question of the Week
On Monday, I, along side 19 other individuals who are "living with it" met to hash out the details for an ePatient Bill of Rights. It was veritable pu-pu platter of chronic illnesses and as we poured our coffee, introductions could be heard from all corners of the room. "Hi, What's your disease?" To say that this group isn't shy is a gross understatement.
We all share the incurable-chronic-illness thing; but more significantly for this particular meeting, we are all deeply entrenched in the ePatient world of coping, connecting and learning. We spoke to what needs aren't being met and how the relationship to our care team would be greatly enhanced by taking advantage of all the Internet offers. Getting the information we need from our doctors and health care providers was one of many themes that grew out of this brainstorm session.
So tell me, what do you think should be on this bill of rights?