The Right To Your Own Records
This story is not really about technology. It is about dignity. Last week in Salt Lake City, I met ten Americans whose lives were shaped by information blocking. One had lost a child. Another had been in a coma. Others were disabled and are now helping other disabled people try to get the benefits they earned. Every one of them ran into the same wall. They could not easily get their own medical records. That may sound like a paperwork problem, but it is really a rights problem. In practice, the burden of collecting medical evidence often falls on the sick person. Many disabled people are asked to track down hospitals, specialists, imaging centers, and mental health providers on their own. They are told to call again, pay $1000's in fees, wait, and resubmit. Some are cognitively impaired. Some are grieving. Some cannot organize a stack of papers, yet we expect them to navigate multiple portals and fax machines. The public believes the government can instantly access any med...