For the last five (5) years, I’ve been an active patient. This means I see a plethora of doctors regularly in a variety of places/states/types of offices, I have a pharmacy in my bathroom for cancer treatments and all the side effucks, and I’m in infusions centers, phlebotomy labs and hospitals regularly. I also ask a LOT of questions about protocols and responsibility and who does what. These questions have led to meetings and advocacy for protocols that have actual consequences when violated. I’ve spent a lot of time at tables discussing my recommendations and addressing holes in the EMR and communication between groups/offices.
And I have come to a conclusion.
I’ve never been in an office or hospital or clinic or lab or anything associated with my medical care that is actually/truly patient centric. There are tons of people who care an awful lot about patients and work hard to ensure needs are met and addressed — many of these people go out of their way all day long and are amazing. It isn’t the medical professionals or health care workers that intentionally deviate from this goal of centering the patient in their care, they just have to comply with protocols and specifics that are imposed on them, usually without their input.
It’s the business people. The Administrators. The bean counters. The efficiency consultants. The executives. The boards. And, yes, the insurance companies that impose rigid and inflexible processes that stymie the medical needs of the patients. Those people who are focused on the profits that result from the healthcare system most often forget the actual people they are “serving.”
These people at the “top” of the health care system rarely, if ever, see a patient. They rarely, if ever, experience the day to day issues facing the patients whose funds are filling their pockets. The people most often making the most important decisions are simply so disconnected from the actual experiences of the patients they are supposed to serve that they don’t even know how much they are making that experience more difficult.
I’ve not met a doctor or HCW who disagrees with my conclusion. In fact, those same people who are disconnected from the patient experience are also disconnected from the clinical experience. The need to document document document everything makes every clinician spending more time in front of a screen than interacting with the patient.
So why is this happening and what can be done to address it!?
- The brokenness of the system leads some good people to do what they can to address it from the inside. I have a dear friend who is working for a pharmaceutical company and focusing her efforts to bring in diversity through the vendor contract arena. This is huge! Other people take other roles where they can provide different perspectives, different insights. Find these people if you can and educate them on the specifics of your experiences.
- My irritation led me to sit down with the chairman of the board of my hospital system with a spreadsheet of all the things that were going wrong and my suggestions for correcting. I’ve had more meetings about obscure programs and IT solutions than I care to recount, but I’ve seen some adjustments and I can quote those rules to the staff who break them.
- Surveys. I get a survey after every visit and I answer every single one. I include names and details when I remember them and I always include my name so they can verify my experience. It’s important to respond when the system asks for feedback so that the internal discussions include your perspective.
- Patient advisory panels/groups. My cancer center disbanded theirs years ago and have never resurrected it. Pretty clear signal that the patient perspective isn’t of value, isn’t wanted.
It is my opinion that if an organization doesn’t have patients front and center in all initiatives to provide perspective and feedback, that organization cannot possibly be patient centric. When an organization isn’t listening to the people it serves, the tagline of “healthcare that cares” is a pipedream that will never come true and is pretty insulting to those of us who know that it isn’t true.
And all of this only puts a horrible burden on those of us who just want to stay alive. Every appointment is a trigger since there are always things to be fixed. Recently, I asked my palliative doctor to give me extra meds to help with dealing with all of this stress. She totally understood how much of a struggle it is just to show up for the life saving medication.
We all deserve patient centric care, always.