When I returned from the Medicine X Conference at Stanford I felt empowered as a patient. Meeting so many people with healthcare ideals that were similar to mine made me feel as though anything was possible. Once I got back I saw an invitation for patients to attend this year's Patient Experience Conference. That was one in the "win" column - last year in social media there were complaints about the same conference for having no patients in the room. This year the policy changed, in part due to sponsors I'm told.
Yet in hospitals as a patient I often don't feel like the advocate I am. I don't feel empowered - I do what I'm told to do. I would like to see a forum or some route for input into the Safety and Infection Control practices, but though I read the newsletter, newspapers, emails and even the signs posted looking for volunteers for mental health, depression, bone health, migraines etc, I see no way to join any discussion of safety and infection control in a particular institution.
As an example of an issue, the idea of walking barefoot on a hospital floor would not seem healthy to many people and yet I am asked to do that regularly. It's an ingrained habit not to rock the boat. Friends in my online group relate similar experiences, like Julie's at her hospital, when the CT tech wanted her to lie down on a sheet that did not look clean. She felt like taking a dirty sheet in to them with a footprint on it and then a clean sheet to show. the difference.
I would argue that no one is perfect, and that try as they do, the infection control committees could use input from patients who sit there sometimes for hours on end observing what is going on around them and worrying.
There are many more examples now of hospitals listening to patients and those are steps in the right direction but I would like to see them all on similar paths.