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 medical record. That is not true. Records are often faxed. A human being has to review, scan, and index them into a system. Sometimes the scan is unreadable. Sometimes the file is incomplete. Each missing page can add weeks. Each delay can add months. During that time, the person may have no income and no clear path forward. Information blocking in this environment is not an abstract policy. It is a lived experience. We built a healthcare system where data is fragmented and often treated as a product. We built a disability system that depends on that data to make decisions. Then we placed the weakest person in the middle and told them to bring it all together. If we are serious about rights, access to your own medical record must be simple, timely, and affordable in real life, not just on paper. A real solution starts with treating access as a default, not a favor. Patients should have timely digital access to their full medical record in a format they can use and send. There should be clear national standards for how quickly records must be provided and how much can be charged when those records are needed for disability or other public benefits. Social Security and the state agencies that decide disability claims should have secure digital channels to receive records directly from providers so that claimants are not forced to act as couriers. We also need to be honest about capacity. Shared responsibility should not be a phrase we use when it does not match reality. Information-blocking rules must be enforceable and measurable. A person who worked their whole life and becomes disabled should not have to fight for access to their own information just to receive earned benefits. A parent who has lost a child should not have to argue with a records department while grieving. We have the tools to fix this. What we need now is the will.