I've spent many a night up till 3:00 am writing Healthcare IT standards and implementation guides. Some of these are now used in the hospital 17 miles from my home. Soon my Doctor who has been using an EHR will be able to given me an electronic copy of my health record in an standard (HITSP C32) that I and many others edited for HITSP, based on a guide (XPHR) that I worked on with many others in IHE, building from the CCD guide that I and thirteen others edited in HL7, building upon the HL7 CDA standard which I also helped develop. That work now currently being updated in the S&I Framework projects from ONC.
My dream is that nobody will need to spend three days in the hospital recieving inadequate care because medical records closes at 5:00 on Friday. My step-father did due to the fact that my mother didn't carry his X-rays in her 3-inch thick folder of his medical data. My mother-in-law did too, fevered and raving, antibiotics not working, and doctors confounded until they discovered when records arrived on Monday morning that she'd just completed chemo the previous week.
I've been at this for 7 years and we still aren't where we need to be for myself, my family and my community. My community includes a group of people like me. All save one write blogs, most about about Healthcare IT, and most are also on twitter. This community leads or has led work on standards in ASTM, DICOM, HITSP, HL7, IHE, ISO, and the S&I Framework. They work for themselves or healthcare IT vendors or healthcare provider organizations, developing solutions to problems they or their family have faced personally. While we may be "paid" by out employer to do this work, nobody pays us enough to stay up until 3:00 am to finish the work. We are patients, volunteers and advocates for better health IT. What we do in standardizing Healthcare IT must be something can be used with our parents and our children, and our communities.