Whose Data Is It? Who “Owns” Your Medical Records?

Way before my Dad showed symptoms of Alzheimer's, he advocated for patients' access to their electronic patient records. On a personal note, he was afraid that none of his doctors and specialists would have the whole picture. He feared they might miss something important. He felt it was his responsibility, and that of his family members, to assemble and preserve our medical records so that we could all control our own healthcare.  He began to advocate about the need for electronic medical records and for patients to have unfettered access to their own records. In the 1980s, he convened meetings at his retirement home, in which he and other residents, many of whom were retired physicians, told the management and caregivers at their assisted living facility, what they expected and wanted: to have all of their medical records digitized, to have these readily available for themselves, their family members, and any medical specialists who would be called upon to serve them.                                                           

John W. Seybold

My father was a remarkable man. As the "father" of computerized typesetting in the 1960s, he knew a thing or two about computers and digital information. He didn't live to see his own records available in digital form. But if he were still alive, he would be an active advocate for patient’s access to their complete digital medical records. So it's up to me to carry on!