Introducing Patients First Foundation & Patient Zero

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Ok, last post of preachy, sermon-like content, I realize how this all comes across. I’ve been told t

Patient Zero Part 6 - Gorilla Insights: Addressing Feedback

By Steve Carbonara • January 6, 2025

Ok, last post of preachy, sermon-like content, I realize how this all comes across. I’ve been told that my presentation is Angry, Utopian, Redundant and Unclear. So let’s address those comments, as I believe I am speaking for the average patient across this nation. For some background, I’ve been working in healthcare IT since 1999. I have worked in 46 states, across all of the major cities and nearly 1,000 smaller cities and towns. For nearly 7 years I drove 1,500 miles per week at minimum and then for another 7 years I flew 3 weeks a month across the nation — point being that I’ve had 5,000 breakfasts and lunches at diners, talking with ‘the average American’ and hearing the stories of this nation. As you may guess, I’m not shy — and nothing is better than talking with the five 80 year olds sitting at the diner every morning at 6 a.m. in some small town. You hear stories going back decades, of what we were and what has changed.

Patient Zero Part 5 - Gorilla Insights: The Beginning

By Steve Carbonara • January 3, 2025

So near death experiences aren’t the only failure of healthcare, like I said earlier, there are many stakeholders to blame — or hold to account. Where did it start for you as a patient, or as an employee (insider) working in healthcare, or as a caregiver trying to keep your parents healthy and alive?

Mask mandates forced on patient's that cannot breathe - denied health care

Patient Zero Part 4 - Gorilla Insights: Advocacy for Rebuilding Healthcare

By Steve Carbonara • January 2, 2025

Quick recap: I almost died, and United is poorly run and focused only on earnings and not patients. Done — let’s move forward. So how did I get in that hospital bed? Who was to blame? Well, let’s start with this one fun fact — even though there are many people to blame for many things in your life, the first person who needs to be blamed in every scenario is you. Personal accountability (an obligation or willingness to accept responsibility or to account for one's actions) is the focus of Patients First. We all need to take responsibility (able to answer for one's conduct and obligations) for ourselves before we can demand it from the other stakeholders in healthcare.

Patient Zero Part 3 - Gorilla Insights: Accountability in Healthcare

By Steve Carbonara • December 31, 2024

So where were we? Oh yeah, I got discharged on Saturday, August 3rd, at 2 p.m., and by Monday, August 5th, at 1 p.m. I received a denial of obligation from United. How did it get there that fast? Did they hire someone to drive it to me to make sure I knew they were going to screw me? Having a letter telling me that there was a ‘restrictive clause’ on page 50 of a 70-page contract that I had no right to review and negotiate was hilarious! It was better knowing that they recorded my two calls with their support team that clearly told me that my coverage allowed immediate use — remember, they told me the only ‘restriction’ was that the payment needed to be processed! I cannot wait to get those recordings during discovery — not sure if we will get there, but I know I’m not caving in just because someone threatens me with ‘going to collections!’

Patient Zero Part 2 - Gorilla Insights: Restoring Humanity in Healthcare

By Steve Carbonara • December 27, 2024

Ok, the last post was a bit evangelical, I’m sorry, but I didn’t know where else to start. Should I have just jumped into telling you how bad my healthcare experience was, or should we be evaluating this discussion from a more holistic perspective than just blaming all of the bad actors? I guess we’ll never know, but thanks for coming back!

Patient Zero Part 1 - Gorilla Insights: Resilience in Healthcare Struggles

By Steve Carbonara • December 23, 2024

Why a gorilla you may ask, well, let’s just say I’ve been called that a few times in my life. While I can be polished and executive in my delivery, I am also very blunt and just as aggressive as I am kind in my tone. As I write my personal story, and as I speak as a patient, I believe that full transparency is key, and that means full emotional transparency, as healthcare is not just ‘data and facts,’ it is also our mind, our emotions and our spirit — healthcare is as much love as it is any medical device, doctor or drug.

Introducing Patients First Foundation & Patient Zero

Steve Carbonara

Healthcare should be about patients—not profits.

For far too long, the healthcare system has been guided by corporate priorities, what we call ‘institutional first’ healthcare, while patients have faced limited access to timely, affordable care. The Patients First Foundation is being launched because it is time to shift control back to patients, putting their well-being at the center of every decision, and ending corporate ownership of our health.

I’m Steve Carbonara and I am going to be sharing my personal health journey over these past 5 decades in order to shed a light on what is wrong with our system, both from a patient and healthcare technology insider point of view. I will be posting a 3-part blog post this next week in my role as Patient Zero, I will be telling my entire healthcare experience. Like many of you, I have been complaining for years about my experience, and now it is time to use these experiences to define, develop and drive solutions.

I am looking for the next One Million Patient Stories from all of you, so that we can prove how common these issues are, while learning which are the most costly or deadly issues we need to solve first, while we begin to build a process to hold every stakeholder accountable for their actions moving forward. If you want to share a story with us please use this link.

I am also looking for other healthcare professionals, like me you have stories about the waste, fraud and abuse across every sector of the healthcare industry. Please Share Your ‘Insider’ Stories so that others can begin to understand what we are up against with this corporate tyranny over healthcare. If you want to share a story with us please use this link.

My team and I are building a national collaborative of patients, and a movement to empower individuals to manage their health, make informed choices, and advocate for policies that genuinely support patient wellness. This is a call to action for every patient, physician, nurse, caregiver, healthcare professional and advocate—to join us in building a patient-led system that prioritizes health over profits.

Thank you for your time here today, I appreciate you spending 10 minutes with me and letting me introduce you to this foundation and our team, we all appreciate your consideration. Consideration of telling us your story, or becoming a member, or partnering your company to the foundation - all we can ask is that you consider how you can make an impact and help your fellow patients and those that you are a caretaker for today, or maybe will be in the future.

As always, please contact us with any questions or comments - until next time…

Steve

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