Patient Centric

Advocacy 3 Minutes

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.

Published by Abigail Johnston

I'm a daughter, a wife, a mother, and I've been living with Stage IV Metastatic Breast Cancer since March, 2017. All of the words I publish are my own.

Published

30 thoughts on “Patient Centric”

  1. So, so true, Abigail. I get the same message from my daughter who is an ICU nurse. She has been a traveler for the last 2 years and has worked in several hospitals. Her job is stressful, but the greatest source of stress across the board is from the expectations/policies of administration totally out of touch with patient care.
    I know that effecting change can feel like pushing a rope. I also agree that patients (and their care givers) who have the capacity to speak up, need to. What a burden to carry ON TOP of the physical and emotional reality of the illness.

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    1. Oh the stories she could probably tell!! Having traveled to several different places for second, third, and fourth opinions, I do have some perspective on the different ways that different institutions are attempting to bridge this gap. Some are doing more than others. And yes, those of us who are the actual end users of the various programs are the only ones who can provide context to the powers that be. But yes, a giant burden to carry on top of just trying to stay alive and get the treatment necessary to do so. I have tried and tried and tried to communicate this to the administration where I am treated and while some incremental changes have been made, most of which they were ignorant about until I told them, it is the overall culture of organizations that permeate into every detail of how things are done. If you don’t have a culture that is centered on the patient, then decisions will be made based on other values.

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  2. Abigail, I have seen this same thing transform the world of education over the last 35 years. Just like medicine has lost sight of the patient and the patient/medical care team (doctors & nurses), education has lost sight of the student and the student/teacher relationship. The disconnect is beyond real and overwhelming. So grateful that you continue to speak your truth about this and find ways to push back and fight for change.

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    1. Wow, I wouldn’t have thought that the world of education would be affected so much as well. I keep trying to get to the root causes, but maybe the issue is just so complex. I do know that the need for everything to be billable and measurable has been a significant issue. And there are always bad apples in every profession that make it harder for those who are genuinely trying to make a difference to truly do so. These disconnects are just heart-breaking and affect the least able/equipped to seek change.

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  4. Very important expenditure of your time to educate all those folks, Abigail. I can’t imagine how frustrating it must be to confront this, but I love the image of you seated with the Big Guys and telling them a thing or two. Take pride in any progress you’ve made.
    I shall be more diligent in answering those annoying patient surveys from now on!

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  5. It’s all mind boggling to me. I’m in a small province in Canada, and while I think my oncology team does their best, they are overworked and understaffed, and that doesn’t help the situation for lots of reasons. We do not have online access to scan and test results as patients do in the US and in some Canadian provinces. So we are left with weeks of stress waiting for results until we have a scheduled appointment. I have never seen a survey such as you describe. I’d like to improve things but don’t even know where to start. Thank you for all you do.

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    1. I hear you and I wish I had answers. There are so many pros/cons of every system and the waiting part is the worst for all of us.

      As far as where to start — I took the things that I was the most worried about and I met with the highest person I could find. That turned out to be the chairman of the board of my hospital system. That got me in the room with executives and then I met with them regularly. That’s me. I think everyone needs to figure out what makes the most sense to them individually.

      Starting with wanting to help and looking for ways to do that is a great place.

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  6. I totally agree with you! As a bean counter (it’s my day job), it’s why I could never work for a hospital or insurance company. The closest I’ve ever gotten to the patient-centric environment is when I worked for a non-profit organization that assists people with disabilities. I worked in both areas — administration and also volunteered to work directly with the people we were helping (referred to as clients, not patients). It was the most rewarding job of my entire career.

    Of course, there is still money management that must be done, but instead of adding to the profit margin, it was to secure funding so that we could continue our work.

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    1. Now this makes so much sense. You have an understanding of how you fit into the organization and your strengths/limitations. Good on you for also volunteering for working with your target audience. I keep telling administrators that they need to be a patient for a day or shadow a patient to see how things really are. Thank you for reading and commenting!! ❤️

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  9. It’s like you’re in my brain sometimes! I was taking my little one for an imaging appointment, when the office for my appointment TOMORROW calls and says they haven’t received the referral and that they said they’re not my doctor anymore and I was transferred to some clinic. *panic* I sat there a full five minutes (thankful I left early for the scan) while she found my actual doctor’s info. I then asked if she would like me to call and remind them.

    I did and they repeated that the insurance had changed primaries for all of the patients, but she would check to see if they had changed it back.

    I’m not even sure who messed up here, as she said they had “fixed it,” but they have NO idea the stress of how long it took to find a doctor willing to treat me and make referrals when needed. They just tossed it out there like I see a doctor once a year.

    I also had my doctor argue for an HOUR with my insurance because they are charging me for cough syrup because I’m over 18 and should be able to take pills. It didn’t matter what we said about it being for COUGH and not PAIN: that was their policy.

    It really is all a train wreck sometimes. I used to carry copies of all of my files with me to all appointments! 🤷🏽‍♀️

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      1. It did. But what a mess! I finally had to get my doctor’s office manager to help coordinate the infusion center, the doctor’s orders and my insurance on the same page at the same time. 🤷🏽‍♀️

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  12. This is so on point and incredible to think it is something we are all experiencing. The need for the implementation of a more smooth running system is something sorely missing, but you have inspired me. Thank you. xxx

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