Sometimes I am asked questions like what government agencies or officials I write to and ply in effort to get something done. All the agencies currently in existance have the perspective of caregivers more than they do of patients. There is no one to write to or ply who can or will do anything substantial.
Government agencies are political too and cannot stand up to the influence of medicine. Look what happened when the government tried to do something about mammography.
The last thing the healthcare industry will allow is for the government to collect data on what is happening in healthcare. One constantly hears about how much liability would be created and how much that could cost. Apparently it is too expensive to discover what is wrong in order to prevent unnecessary death and injury. Nurses won't write it down. Doctors will erase it (see survey and loyalty). Political interests will not allow tabulating what is left.
This is to be expected since none of the agencies currently in existance were established to advocate for patients. They were established to advocate for caregivers. Patients have no dog in this fight. There isn't anyone a government official or a journalist can call to get the thoughts of the patient community. They only can call care givers. And care givers do not represent the interests of the patient community. They are not even aware of them.
Most of the solutions will have to come from outside of government, but before they can there needs to be one fundamental agency with governmental authority to lay the ground work. It probably should be state patients boards.
After that we need advocates who are outside of government, perhaps like communty patient agencies.