Pay it forward, with your medical information

I want to start off this blog post on a tangent, that does nevertheless relate to the title. For various reasons, I have been watching a number of motivational and inspirational videos via YouTube. There is no question that these are very well-crafted, and some of them truly do transmit the message both verbally and visually, that limits are very flexible, and are far more a decision rather than a physical wall.

The recurring theme throughout the videos I watched, is that great achievement comes through great effort, great concentration, razor-sharp goals and most often great sacrifice. As you listen to these videos, you cannot help but be impressed by the achievements of people who you would think would be curled up in their beds, having given up on life. But one after another, you can watch and hear stories from people who had a great part of themselves taken away, yet overcame these tragedies and achieved greater things than most people will ever even dream of.

I’ve spoken many times about the 11-year period during which I was medical director and head of IT at a former place of employment. And I have described far too many times, my 24/7 work life during this whole 11-year period. I achieved a tremendous amount during this time, far more than I ever initially believed I could do. And in keeping with one of the motivational videos I watched, the trigger for a great deal of what I did was being literally laughed at by people who said “it could not be done”.

I sacrificed sleep, social engagements, time with my wife and family, and definitely anything approaching personal time, hobbies or interests. My problem with these motivational videos is that they speak grandly of sacrifices that must be made to achieve greatness, or to pull someone out of their own rut. But they gloss over the subjects of those sacrifices. I sacrificed a significant portion of my relationship with my children and wife. I sacrificed a portion of my health, which plagues me today. Based on the statements of others, I can say that I contributed to an improvement in the quality of care across Israel. As a physician who made aliyah with great dreams of making a difference, there is no greater achievement that I can imagine. I have never needed or sought out overt recognition of my work, but I see it time and time again in many ways, and in the faces of people who were cared for by the company that I ran. In my opinion, this is as good as it gets. The question is whether all of these successes justify the sacrifices I made.

For every person in this world, there will be sacrifices that you make to achieve anything. If you go to school, you sacrifice your free time. If you get married, you sacrifice your independence. If you have children, you sacrifice your mobility and finances. Needless to say, I am greatly in favor of going to school, getting married and having children. So clearly, some sacrifices are worth it in a simple cost-benefit evaluation. But despite my personal achievements, I lost something that I can never get back. And I cannot say that it was worth it. The truth is, that barring certain events that led to my leaving my previous place of employment, I could very well still be working 24/7, constantly trying to upgrade my EHR with the latest technologies, that are being released at a faster and faster pace all the time. I could easily see myself spending even more time on quality assurance and physician training. And if I was still working in such a way, I would have missed out on many other things over the last couple of years that were very important to me. In fact, these things were critical to me.

The investment I made in time definitely compares to that of many founders who created their own startup. A startup is a commitment which often surpasses all other commitments. There are relationships and personal issues that strew the sides of the roads that startup leaders have traveled. Sometimes, the greater the success of the startup, the greater the damage  to the founders and leaders. I am sure that there are many startup leaders who make a conscious decision to put their personal lives aside until they have achieved “at least” their first exit. In today’s age, it is by no means unusual for people to marry and start a family in their 40s, 50s and even later. As fertility technology advances, and lifespans dramatically increase, it may not be that long before having children past the age of 60, is seen as totally normal. By this time, the individuals will feel that they have achieved their professional success, and perhaps even financial security. What better time to have a child and then devote all your resources to that offspring?

How does this relate in any way to the title of this blog post?

Let me remind everyone that I am a hard-core socialist. And let me remind everyone that if I was American, and if I was going to vote, I would vote Republican, as I see Bernie Sanders’ politics and world view as totally foreign to my own. How is this possible, given that Bernie openly declares himself a socialist? It’s quite simple and I’ve said it in the past. My version of socialism is intended to give people a hand up, not a hand out. I believe that health care, education and even basic nutrition should be guaranteed by the state for its citizens. I believe that each of these is an investment in the future of the citizens, and the payback is worth far more than the initial payout. Socialism is not meant to be a lifestyle crutch. Socialism is not communism.. There is absolutely no reason why a very active market system, as capitalist as it comes, cannot be built atop such a socialist foundation.

Nevertheless, in a socialist system, there should be the fundamental acceptance of the principle that those of means sacrifice more than those of lesser means. I pay higher taxes and I pay a much larger medical insurance premium than someone who is a cashier. And I am totally comfortable with this, as I have had periods in my life when I was earning less money, and the same socialist system took care of me without bankrupting me. But the principle is that everybody gives so that everybody benefits. And I will say here that the future of the best possible medical care is totally dependent on this socialist principle.

Every day, I read articles in top-flight journals that bemoan the fact that they suffer from a lack of data to fully evaluate a situation. For example, one of the major issues in the American healthcare system is high readmission rates after discharge from the hospital. The assumption is that high readmission rates are a reflection of poor initial management, in addition to financial benefit from the readmission.

How does one evaluate if a readmission was just poor luck or non-preventable conditions, versus poor initial care or financial incentives? Well, one way to do this is to evaluate the status of the patient from the moment that he or she leaves the hospital until that moment that the patient returns. This is no longer a question of waiting for science fiction style tools to track the health status of patients at home. These days, it is definitely possible to track pulse, body temperature, blood pressure, diets, medications taken, physical activity, sleep activity,  and more via home-based sensors, that relay this information to a cloud-based storage unit.. And these days, we have the CPU cycles and algorithms to analyze this data to determine if the patient was doing well until he or she had their Thanksgiving dinner with extra salt, or if the patient was doing well, but failed to take their prescribed medications. Or, it could be that a necessary medication was not even prescribed. All of this could be monitored and evaluated with present-day technologies. The cost of setting up such a system is no longer prohibitive.

So why doesn’t it happen? There are lots of answers, meaning there is no one good answer. One of the arguments is security. It is just too difficult to ensure the security and privacy of people who have their medical information stored in the cloud. I have discussed this issue in the past, and I have made the argument that all of us trust banks to manage our most secretive financial details without any apparent concern. The moment someone might discover that we have high blood pressure, we all suddenly become frozen in our paths.

In Israel, the biggest HMO is actually the second biggest HMO in the world. It handles over half of the population’s medical information. I have made the argument in the halls and meeting rooms of Israel’s central government, that there is absolutely no technical difference between handling half of the population versus the information of the entire population. In fact, if secondary to cosmic waves generated by visiting aliens, all Israelis switched to this largest HMO, the HMO would be more than happy and would simply upgrade its resources to handle the extra load. No one would raise the argument that having one HMO manage all of Israel’s medical data is dangerous.

So why is the medical information of the Israeli population hidden away from the benefits of data analysis, that could uncover all types of ways of improving quality of care? Without referring to anyone specifically, or any department specifically, or any ministry specifically, it comes down to politics, small mindedness, ignorance, stupidity, ego and other terms that would be far less flattering.

The people of Israel should demand that every iota of medical information  collected on them be saved to a repository that is first and foremost accessible to the patient him or herself. I am able to access my bank account and know how much money I have or don’t have at the moment. I am unable to access the MRI that was done on me in a hospital, despite the fact that it contains very important information. And was I to need this study for comparison to a new one, I would have to travel to the hospital, pay a ridiculous fee and wait hours to receive the material. I should point out that my EHR made patient information totally available to the patient any time, anywhere. And yes, we were unique in that fashion..

If we all share our medical information, and demand that the medical facilities caring for us share the medical information they collect about us, there would be a significant improvement in quality of care. Research papers unlike others being seen in the major literature, would pour out of Israel. We would be able to see connections and find clinical issues that other systems are simply incapable of doing. What would the cost of such a thing be? Far less than many people claim. Those that claim that this would be very expensive, make such a claim often out of ignorance  or misinformation. It is not entirely their fault. There is a tremendous amount of miscommunication going on, and I’ve witnessed it myself far too often.

To summarize: there are very few people in this life that can get something without sacrificing something. There are people who grow up in an environment where they are given everything they request. These people are to be pitied. They never seem to internalize the inherent value of things, and this can cause havoc when trying to do something like have a relationship with another person, which invariably involves  some type of sacrifice. Once again, the benefits of the relationship can more than compensate for the perceived sacrifice. But for someone who has never given without the expectation of receiving, a relationship may be impossible.

Every person in the world should have their medical information online. And yes, it will be hacked into and to some extent be exposed on the open Internet. And that’s a sacrifice that everyone has to make in order to dramatically advance the quality of healthcare across the world. Sometimes, if one is lucky, that person will never need to take advantage of the medical data he or she sacrificed throughout their life. There are people who barely know what it means to be ill and will die quietly in their sleep at a very advanced age. I think it’s fair to say that many of us would envy such a life, but very few of us actually experience such a life. Therefore, consider it a “pay it forward” action – your genome, and all of your personal life and medical information get mixed up together with everybody else’s, so that we can figure out cures for diseases that we thought were incurable. I personally dream of such a world. And it is my hope, that all of you will one day join me in my dream.

Thanks for listening.