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.

So, if I’m being Angry or Utopian, then of the 50,000 conversations I’ve had over the past 25 years, there must be a lot of Angry and Utopian people out there. I’m nothing more than the collective of the experiences I’ve had, and the 50,000 people that I’ve met have provided a storybook that is more horror than comedy or romcom. I’m not sure how I apologize for that, or try to soften the message, all I know is that I am bringing the stories of a nation to the forefront, and asking all of you to tell your story so we can start defining the path forward, what are OUR EXPECTATIONS as patients, as taxpayers, as people.

Angry: Being told I come across as angry is ok, because I think I am and we all are from what I can tell. The murder of the CEO of United and the reaction to it, proves that many people are angry as 30% of all people under the age of 30 believed that this murder was justified. I do not condone murder as a solution, but don’t we have to deal with this national anger? Is it not our obligation to address the elephant in the room; that ‘public utility/service’ companies do more than optimize shareholder value, they can save or kill patients, based on their actions or inactions. Denying care to patients means patients die. While murder is not justified, anger is. As a patient collaborative we have to utilize our collective anger to solve these problems as a whole, not punish one corporate shill that is nothing more than a cog in the machine.

Utopian: So the average person in this nation believes that the government should represent us and do right by us, is that utopian? Isn’t that just basic civic/societal agreement, that we pay into the system to support us all? People have told me that our stated goals via Patients First sounds utopian; this confuses me, because we always tell our kids to aim for the moon, so that if and when they miss, they are still in the stars? All of our sayings / cliches provide a vision of good and ‘utopian’, but when I set goals for Patients First, they sound unreasonable and unattainable? Building our collective voice to drive health equity seems normal to me, how did that become a utopian dream to have a fair and just society? 

Redundant: Yes, there are 1,000 foundations trying to solve problems, so what, we cannot build a Patient Collaborative to help direct those groups, to help define needs and how money is invested? Patients First is not being built as the only solution, we need to partner with like minded organizations that are experts in their field, so we can solve more problems faster. If we could get 100M patient members at Patients First, would that not support these other groups and their work, is there a reason why people just assume it would not?

Unclear: Let me be very clear here — first, we are building the only national collaborative of patients in the USA. We are organizing and mobilizing the 202 million people that are in the 18-65 age group, per US Census. 

Second, of course we invite the 65+ patients, but we also understand that many of them are on Medicare & Medicaid and as such do not deal with the commercial insurance and employer issues that the rest of us struggle to solve. 

Third, those that are 25 and under are typically on their parents insurance plans and do not deal with insurance. That may be true, but I believe the 15-25 year olds to be the saviours of our healthcare system. This demographic is the first generation in the US that has been told that they may not live as long as their parents and probably won’t make more than them either. Imagine that, being told that the American Dream is over and that you’re living in the spiraling down phase of a once great nation. To this age group of young Amercans, you are our greatest hope and greatest asset as a country. I look forward to working with you all to build a healthcare system that protects you and heals you, instead of monetizing you. It’s time for ‘healthcare’ to not be ‘sick care.’

If we can get 10-50-100 million of this group to organize we can advocate in every city, every state and in the White House  —  our voice can and will be heard, as we move from Literacy to Advocacy to Empowerment, the 3 Pillars of Patients First. 

How will we do this? By building technology for us, by us — by owning and managing our own personal data and understanding how we are being monetized, and building mechanisms to modify these current systems to our benefit as patients. We need to BUILD OUR WAY OUT of this mess, there is no easy option, there is no political saviour like RFK Jr. He may be a friend and an advocate, but he needs us to stand up and account for ourselves, that will empower him to work harder and to be more diligent on our behalf, but we have to take the responsibility first.

Sorry, got preachy again, but that’s the Gorilla in me, that’s the passion of the everyday American patient and taxpayer. Let’s use that anger, let’s build our utopia (or just a respectful relationship to our masters) and let’s be clear in what we are building together as a stakeholder in this American Dream.

Please send me your thoughts via this form so that you can have your voice heard, how fast can we get to 1 Million Members? Bring your friends and family, we need your support and we need your help to deliver real change for all of us.

Until next time … Steve