All the data we can gather about a person can be used to create a map on the progression of debilitating diseases.
How do we get genes to mutate for a positive benefit? How do we use machines to splice proteins and work on genetics? How can we improve our quality of life by removing the things that debilitate us, at the source code level?
While we don’t have the answers to these questions just yet, we do have the data and resources to start searching now. We need to create a world where genetic engineering is a possibility for the people who need it the most. Unfortunately, our data isn’t being utilized for these pursuits.
Your healthcare data is priceless and the fact that other companies are making you pay to submit it is absurd.
Imagine what you can do with your genome data if it’s in the right hands. Instead of being used for a one-time service, your personal information can be a part of research trials for the cure to cancer.
Aside from that, these companies are taking your money and your data, turning around, and using it for their own profit. For example, you pay $99 or $149, whatever the amount is, to get a DNA swab done. Those companies are turning around and using your data to generate 6-digit, or even 7-digit profits.
In our current economic system, we’re letting the bigwigs get away with putting profit before people. And it’s time that we change how it works, while it’s not too late.
Even when scientists do make progress in the medical field, the effects are not always felt immediately. This is because we may not have adjusted our social infrastructures to accommodate these new technologies.
One example is crime and justice from the 1980s to the 1990s. Since all the information on a certain location’s serial killers and murders existed in data silos, these criminals were free to just skip town once they started getting attention.
Data shouldn’t be someone else’s cash cow. It’s a reflection of who we are—our habits, preferences, and individual history.
TARTLE was created to allow people to share their data and earn from their hard work. You are free to choose how much information you put up for sale, and who gets to buy them from you. At every step of the process, you are in charge.
This is a stark difference from what you experience from big tech and genetics companies. We bet you never knew you could earn from the data you were giving them. It’s time to change how things operate.
What’s your data worth? Sign up for the TARTLE Marketplace through this link here.
As most people are well aware by now, there are a number of COVID vaccines out in the wild now, with roughly a million people every day getting a shot from one of them. That’s quite the accomplishment given that a year ago today, many people believed any sort of vaccine was likely impossible, to say nothing of getting one by the end of 2020. Thanks to a lot of hard work and the clearing of administrative roadblocks made possible by Operation Warp Speed, we have not one, not two, but actually four out there getting distributed.
While the development of so many new vaccines in so short a time is impressive, another daunting task is to actually manage all the data related to the distribution of those vaccines. Which groups should get it first? Who has had it and who still needs it? Who has had one shot and who has had two? What sort of side effects might arise after taking the shot? All of these are important data points to keep track of. The CDC in Atlanta recognized this and set about ensuring that a system was developed that would be capable of managing it all effectively. At least, that’s what they hoped would happen.
What actually happened is a debacle on par with the launch of HealthCare.gov. The CDC issued a no-bid contract to consulting firm Deloitte to develop the Vaccine Administration Management System (VAMS). $44 million dollars later and what the CDC got was not a stunning accomplishment in the world of software development but something that only those who remember Windows Vista could appreciate. Instead of seamlessly tracking appointments and available supplies and all the rest of it, VAMS randomly drops appointments, thinks you’re literally getting a needle in your arm when you aren’t even in the building, and randomly locks staff members out of the system. I don’t care who you are, that program is anything but a success.
While the CDC and Deloitte acknowledge that the system has a few bugs that need to be worked out, they point to user error as a cause. While that might technically be true in some cases, when your system does such a lousy job that a professional health director can’t figure it out after 24hrs of trying, that a 100 doses of vaccine got wasted because VAMS couldn’t keep track of them, and hordes of volunteers are needed to transfer information from paper to the actual system, the problem is in fact the system. Or to perhaps put it more succinctly, when the name of your super great software system becomes a curse word amongst healthcare staff, the system is definitely the issue.
It is so bad that many states are in fact reverting back to paper records because it’s more efficient. Others are going with a paid option rather than struggling with the ‘free’ VAMS system, or even using a patchwork of other systems such as Eventbrite – a system used to manage things like concerts – to keep track of appointments.
How on earth did this happen? How could we possibly have gotten here with a digital revolution going on around us? Part of the issue is that this was a no-bid contract. Anytime that happens, alarm bells should be going off. It usually means that there some backs getting scratched money going into accounts that has nothing to do with the actual contract. Another is that Deloitte is actually run by accountants, not software experts or healthcare professionals. They most likely outsourced it to whatever firm had the lowest bid, didn’t test it and then sent it off to the CDC knowing they would never be held accountable.
Some have pointed to Deloitte being a private enterprise as part of the issue. However, they really aren’t private. Given their obvious ties with the government and the fact they developed this product with no competition whatsoever, Deloitte is more like a quasi-Government agency akin to NASA. It is only a matter of time before a real private company, like TARTLE, which already has an efficient and easy to use system for sharing data worldwide, shows up and presents a solution that is workable and cost effective that will help save lives.
What’s your data worth? Sign up and join the TARTLE Marketplace with this link here.
Data reveals all kinds of interesting things. For example, did you know that you get almost identical results from telling a person he had surgery to remove arthritis from his knee as if you actually did the surgery? If that doesn’t blow your mind just a little bit, I don’t know what will. Of course, all research needs data, evidence to back it up. That is the case no matter what you are looking into, whether you are researching the placebo effect or investigating the effectiveness of the new COVID vaccines. Unfortunately, that data get skewed all the time, or even ignored.
Sadly, even medicine gets tied up in politics and lobbying for kickbacks, or doctors doing things just because that’s what he was taught or that’s what is normal in his region. Think of the debate raging over masks right now. It often has little to do with evidence and has instead become more a symbol of political affiliation than anything else. And when evidence is brought up, you can use the specific evidence a given person brings up to predict their politics with a disturbing amount of accuracy.
Then there are the stories of doctors prescribing certain medicines over others simply because they get more of a kickback from the manufacturer. Or less scary is the tendency of hospitals to order a whole barrage of unnecessary tests “to be safe”. In many cases, they just know they can charge the insurance company. They are recommending unnecessary tests for the purpose of generating more revenue. And of course doctors tend to get used to prescribing certain medicines and treatments based only on a recommendation from fellow doctors.
Now, you might be looking at all of that and thinking that all of these practices are missing the point of what medicine is supposed to be all about. You would be right. Medicine is supposed to be both about helping people get better when they are sick and even to prevent them from getting sick in the first place. That takes doctors, scientists, and others interested not primarily in financial gain but in helping others. And those people need a good source of reliable data that can be honed and refined free of any agenda.
Where does one get such data though? Often, the people on the ground have to rely on data from major companies interested in proving the efficacy of their own drugs. The temptation for researchers at those companies to manipulate their results is great due to pressure from their bosses. So, how do we fix that problem?
TARTLE’s data marketplace is primed to act as a neutral third party in helping researchers and people on the ground gather valuable, agenda-free data direct from the source. Naturally, it is still possible for major firms to manipulate their research results. However, independent groups and doctors on the ground will often conduct (or wish they could) their own research to find out if the treatments they prescribe are effective. For that, they can turn to TARTLE. If they are looking for specific information, they can put the request out there to TARTLE’s members and get quality data from real people. This allows them to ask follow up questions or check up on people whenever they may need, or even subscribe to members’ data and get updates in real time.
This allows medical practitioners a great deal of flexibility as they can develop unique treatments for people with common genetic make ups or even adjust for regional differences in the environment.
TARTLE’s marketplace can still work well for the big companies too. Consider the race to find a COVID vaccine. The very nature of its development means that it will be important to continue tracking those who get it for years to come. By getting full access to individuals, instead of partial access to multiple groups it is possible to cross reference a host of variables in genetics, habits, and environment that would not be possible otherwise. All at a lower cost than what would be paid by going through a traditional data aggregator.
Unvarnished, agenda-free source data at your fingertips to help people help others. That’s the TARTLE mission and promise.
What’s your data worth? Sign up and join the TARTLE Marketplace with this link here.
In case you haven’t realized it yet, TARTLE is a strong advocate for the importance of data collection and evaluation when it comes to making decisions. Part of that is recognizing that it is important that we have complete data, not just data that looks complete. We also have inherent biases to account for, biases that can color how we frame, process, and evaluate our data. Or to put it another way, we tend to see what we want in the data, or only look for the data that confirms what we already believe, not realizing that there are data that goes the other way as well.
The many controversies that have arisen in the wake of the COVID-19 virus illustrate all of this perfectly.
Here are just three examples:
Masks – People on the far right reject them entirely on the basis of a few studies that say their effectiveness is limited. People on the far left advocate for wearing them 24/7 based on the same studies. In fact, it may be that the right masks in the right situation is effective, and many situations where they don’t matter regardless of the mask.
Hospital Capacity – There are many reports that hospital capacity is being challenged. While the presence of a percentage certainly implies that some data has been analyzed, the fact is that data is very incomplete. To truly understand the situation, you need to compare the capacity with similar times over the last couple of years. Another question that needs to be asked is how many of these people need to be in a room with a bed? How long are those beds occupied by a given patient? Is it one person for a week or three people in a day? How is the counting being done? This matters because there is a perverse incentive on the part of hospitals to over-treat people. The more services a patient uses and the more time is spent using them, the more the hospital can charge to the insurance company.
Case Numbers: Cases are indeed increasing but you’re not hearing a whole lot about the death rates. That’s because the numbers there are remarkably low and the average of those dying from it is within a couple years of life expectancy when looked at nationally. In some places the average age of death from COVID is over 80. Also, nearly everyone has some sort of underlying condition that made them less able to deal with the virus.
Another important example has taken a more prominent role in the headlines over the last month. That would be the recently announced COVID vaccines. There are a number of competing ones at this point, each touting an effectiveness of 90% or greater. Now, if that’s proves to be accurate that is amazing. But let’s dig just a bit into that data, at least the data we have as of this writing.
The Moderna vaccine is advertising an effectiveness of 94.5%. To get there, they had an extremely large sample size, a total of 30,000 participants, evenly split between a control group that received a placebo and a group that received the vaccine. What’s interesting is that only 90 people in the control group got COVID; 90 out of 15,000 or 0.6%. Among that small group only eleven got significantly sick. The study made no mention of any deaths.
Of the group that got the vaccine, five contracted COVID and none got significantly sick. Now based on that, we can surmise that the vaccine is effective. However, there are important points missing in the data. For example, we have no idea of the sex, age, health, and daily habits of any of the participants. These are all important factors in determining the effectiveness of the vaccine. If all of the people who contracted COVID in each groups were healthy and in their twenties, that tells us something different than if they were all in their seventies. For example, whether or not they were wearing masks would also be useful. Were they largely staying at home or working as normal? What climate were the participants in? Again, these are important variables.
All of this goes to show that having data, all of the data available in a truly open and transparent forum that anyone can look at is incredibly important. Without that, we are prey to biases, those of others and our own. We need as much unvarnished data as possible to make better decisions and counteract those biases so we can get at the truth of things.
What’s your data worth? Sign up and join the TARTLE Marketplace with this link here.
