The patient cares most and knows the most about their health. And today, in the US, the patient is in the best condition to request and gather all of their various health encounter records into one pile. Even if it comes in as a jumble of Faxes, converted to PDFs, and is a jumble, it is more complete than any single health providers “portal”.
We never have heard a patient refer to themselves as "patient". Whether medical workers like it or not, the term is one indicating submission to domination. I am sure that kind and thoughtful slave owners focused on their acts of kindness rather than the gross asymmetries of power.
I was told that after Pursuing Perfection, that the people at Robert Wood Johnson Foundation now say, "people previously know of as patients" rather than calling them patients.
I find calling people by their names works. For groups of people the term "clients" seems more honest and respectful than "patient." Hopefully the relationship is more that "consumer" of paid for services. But it is often even less--victims of hurried shoddy service. This is the theme of To Err is Human and Crossing the Quality Chasm. These problems have only worsened.
A completely new system of health care is required, built directly from the needs of neighborhoods. No longer abstracting family members and neighbors into "patients"--a context free designation that somehow frees the system from acknowledging and interacting with people who each have preferences, capabilities, assets, social ties and meaningful lives--particular, artful beings.