The Centralized Data Apocalypse.
Wonder why data is all over the news lately? Well this meme pretty much explains why, there’s some shady stuff going on and people are starting to realize it. We’re going to use medical data specifically to explain the realm of data and why data autonomy is something you should care about. Data is the gold rush of the current age. It’s today’s oil, data is literally the most highly sought after resource on the international market. Why, you may ask? Because data is how a company grows, evaluates its competition, builds new products, and makes more money. Simply because information and knowledge is invaluable, more so than any other resource. Many people are worth more annually in data or their information, than they make per income. Yes you read that meme right, the medical data market is in the tens of billions globally. Certain individual medical information is worth thousands alone. Yes your medical records are being sold and it’s an entirely HIPAA compliant process in America at that. Don’t believe us and think this is just some wild internet article? Have a look for yourself from the U.S Department of Health and Human Services. Which is supposed to work by only selling records by removing identifiable factors, but I’ll explain why that doesn’t work later in this article — https://www.hhs.gov/hipaa/for-professionals/privacy/special-topics/de-identification/index.html
If selling your medical records doesn’t sound grimy enough, let’s talk about why this is a bad thing. Medical data is information extracted from your medical records. This data is a commodity built on the back of those suffering from high medical expenses and health problems. This commodity is used by businesses so they can build new medications or technology’s that most of those patients producing the data can’t afford. Insurance company’s use data to raise insurance premium costs on people. So while people suffer from producing data, it’s often used to further their suffering versus helping them. This only makes healthcare less transparent, creates more room for grotesque pricing, and treats people like a means to squeeze dollars out of until they're in bankruptcy from medical debt or dead from being taken advantage of instead of given care. Medical debt is the leading cause of bankruptcy by the way. So why aren’t the general population whose suffering from producing data, getting paid for it while corporate America get’s to buy vacation homes from it? “But what about the wholesome use of their data?” many argue.
While the medical data market fuels innovation, it’s no excuse for disregarding peoples privacy and keeping them out of the loop. If people were involved in this process, the healthcare industry would be 10 times more transparent. People would be able to see the true costs of care, negotiate on the quality of care they receive, and overall implement fair trade. Imagine if only company’s who make reasonably priced medicines were trusted with peoples data. We would literally see fair trade become implemented in healthcare with data autonomy. Company’s would no longer be able to get away with charging ridiculous amounts multiple times higher than their products cost of production. People would be able to stand up against lewd practices invading their privacy and treating them like hamsters on a wheel powered money maker. Many even argue that this is digital slavery because they’re literally exhausting peoples digital labor and restricting their digital freedom. Big business shouldn’t be selling people’s data, data should be a personal asset and a basic human right. Now let’s dive into how this invades peoples privacy.
The worst trade deal is an understatement. HIPAA’s approach at regulating the medical data market is a joke. Per HIPAA if a medical record or personal health information has identifiable factors removed, legally you can sell it to whoever no questions asked. Everybody from hosptials to pharmacys and medical record vendors are selling your information. Re-identification is a breeze with cross referencing different data sets. Every single day hospitals are getting hit by ransomware, where hackers steal all the information off their system then make the hospitals pay to give them their servers back. HIPAA regulations and encryption compliance do nothing against this. The medical records from ransomware attacks often end up on the black market. That’s just great isn’t it, your medical information floating around on the black market. Even the “legally” bought medical information ends up on the black market too though, so don’t give them any slack either. Attached below is a wiki link on data re-identification. Company’s are often buying your information and tracing it back to you. — https://en.wikipedia.org/wiki/Data_Re-Identification
Wack is right! Your medical records and health information are used for some sketchy practices like creating health-scores about you. If you have an insurance company, you probably have a health-score. Imagine those people who have underlying issues that could be corrected, but because they’re out of the loop on their health-score insurance can charge them astronomical amounts while ignoring the opportunity's to identify and correct the problem, like an overweight person with a thyroid issue. Oh yeah, good luck trying to even see your health-score by the way. They don’t legally have to show you, so like the author in this linked article found out about his. This is why we need data autonomy! Attached is a very thorough and in-depth article about the nature of your medical data and health-scores with insurance company’s — https://www.propublica.org/article/health-insurers-are-vacuuming-up-details-about-you-and-it-could-raise-your-rates
This is the response you’ll get if you ask to receive some of the billions in revenue your generating. Businesses consider your data their digital property, businesses are even fighting each other over it and that’s why interoperability (convertible format) is such a big issue. No big tech company’s in healthcare have really been wanting to work together or allow their competition access to their data. Until just recently with the public starting to learn about the data world, company’s like Epic have addressed this. Convertible format issues are a huge problem for people who want to see their medical records, have medical emergencies, or surgery's in different geographies. When different electronic health record vendors don’t even want to get you better care with convertible format, all because it would allow their competition access to their data. Trying to ask business to include you in your data sales is laughable to them. They don’t even want to let you see it which is why record vendors haven’t made patient comprehensive records and will often charge you for your own medical records if you request them. How do we change this?
First off the public has to address that they’re not okay with this. If people ever want big business and big data to respect them, they’ll have to show the market they’re the boss. People and cosumers dictate the market. What really scares big business is people being aware of how valuable and important their information is. The whole Mark Zuckerberg testifying about the privacy of Facebook was a very bad display. Politicians didn’t know what to ask him and Zuckerberg was able to beat around the bush. That entire “trial” or whatever you want to call it just goes to show that people still don’t have a comprehensive understanding of what’s going on with their data. Zuckerberg totally made it seem like Facebook just makes money selling ad’s and has nothing to do with selling peoples personal information.
All the public has to do is address this. You should be the only one selling your data, that’s facts! There’s already a very interesting space of emerging company’s that want to help you control and sell your data. The tools are here, the knowledge here, now people just have to reach up and grab it. No more data brokers who keep the main stakeholders out of the loop. No more disregarding peoples privacy. No more company’s using data against the people who created it. No more! People have to say no more.
We are the captains now! People are going to have to show the direction of the market will work for their best interest and not the corporate world. There’s some really cool company’s with grass roots models who you’ll want to check out. Health Wizz, Betterpath, Hu-manity, Citizen Health IO, Wibson, CoverUS, Patient Savvy Coop, Unity Health Score, and many others are either already on the market or getting ready to enter it. Go download their apps or make an account on their website, check them out! They are whose going to start the centralized data apocalypse.
It’s company’s like this who the public will want to work with. Ones who forefront people as the owners and beneficiaries of their information. Big business will have no choice but to adopt the model of personal data ownership with the public backing this emerging market space of data autonomy. It’s your data, stop letting big business leach off you. Smack them around, show them whose boss. You dictate the market, they bend at your will not the other way around. It’s time for people to take control of their information and in the process take control of the market. This is the beginning of the end of centralized data markets. Our vision is a decentralized market dictated by people instead of big business. This is data autonomy.
We hope that our display of memes has helped you understand the importance of data autonomy, why centralized data is bad, and what to do about it. Data is sometimes a dry topic, maybe some memes can spice it up. Now it’s time to get rowdy and show big business who really runs the market! The People!