Tartle Best Data Marketplace
Tartle Best Data Marketplace
Tartle Best Data Marketplace
Tartle Best Data Marketplace
Tartle Best Data Marketplace
Tartle Best Data Marketplace
July 28, 2021

What Are They Doing with Your Personal Medical Data? Patient Data Privacy

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BY: TARTLE

Patient Data Portability

In the United States, it is possible to take everything you have, pack it up and move all the way across the country with no one questioning it. You just go, find a place to live and you’re good. These days, thanks to the digital revolution and the gig economy, it might even be possible to keep your job. You can even travel all over the world and bring your computer and your work with you. Yet, there is one particular thing you can’t easily take with you – your medical records. 

The reasons for this are simple. Medical information is some of the most personal there is about you. It can affect your job, your insurance, and reveal areas of weakness that bad actors could take advantage of. Because of that, naturally you want that information kept private. Not just from your neighbor but from other companies as well. However, is it really private? And there are certainly times that you would want your information readily available. Just imagine you are several states over on vacation doing some hiking. You trip and hit your head on a rock, knocking yourself unconscious. You weren’t out by yourself so your friends got you to the hospital. They doctors hit you with some anesthetic – which you happen to be allergic to. You have a massive reaction that delays the surgery you need to relieve pressure on your brain. The end result is that you lose function on the left side of your body. This entire situation could have been prevented if the doctors could have had quick and easy access to your records that detail all your allergies. If they had that information, a different anesthetic would have been applied and the surgery would have happened sooner without any complications. Now, for the reasons already stated, it is hard for other medical facilities to get your information. At the least, it takes your express permission for them to get it, which you can’t give if you are knocked out with a concussion. Wouldn’t it be better if you had an advanced version of those medical bracelets with a code that provides access to your records? Or if you could just have a digital version on your phone? Something that would make it possible for medical personnel to access your information in an emergency situation could save a life. 

Yet, this is often difficult at best. Ironically, hospitals and other companies that deal with medical information will often sell your information to third parties. It gets used in crafting new drugs as well as new procedures and policies. Sure, your name isn’t attached to the information so it is anonymized to a large degree. However, that is still your information and it doesn’t seem right that Bayer or Moderna should be able to access your information more than you can. And let’s be honest, how likely is it that your medical data is truly anonymous? Just as companies buying your data from T-Mobile can figure out who and where you are if they want, an insurance company will likely be able to connect the dots if they put forth a little effort. It would be fair to point out that having your medical data on the cloud somewhere also exposes it to getting hacked and exploited. However, that is a risk you are choosing to take. 

That’s why TARTLE has partnered with medical providers around the United States to allow TARTLE members to have control of their medical data. Our members can more easily store and share their medical information as needed, allowing them to more readily deal with medical issues. After all, if you are going to be sovereign over your data, don’t you think that should include your medical information as well?

What’s your data worth?

Feature Image Credit: Envato Elements
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For those who are hard of hearing – the episode transcript can be read below:

TRANSCRIPT

Speaker 1 (00:07):

Welcome to TARTLEcast, with your hosts, Alexander McCaig and Jason Rigby, where humanity steps into the future and source data defines the path.

Alexander McCaig (00:24):

Interoperability. What in the heck does that mean?

Jason Rigby (00:30):

What is patient data privacy?

Alexander McCaig (00:33):

Patient data privacy.

Jason Rigby (00:35):

I want to kind of get into this a little bit. Patient data privacy.

Alexander McCaig (00:39):

So you have all of these healthcare systems that are out there, and they're all trying to share data back and forth, but each system's different and you've got to manipulate the data a specific way to get it in there and make sure things are anonymous. Maybe some things won't be. Some systems will register it a specific way and then, "Oh, wait a minute, that's actually telling me too much."

Alexander McCaig (01:03):

How is it that you can maintain the privacy of data, shifting it back and forth, but you're doing it on behalf of the individual? How do you know for a fact that it wasn't shared properly? How do you know that it was truly a private interaction?

Jason Rigby (01:16):

What happens if I go on vacation and my heart starts hurting and I go to a hospital in London, and I need all my history?

Alexander McCaig (01:25):

Oh, interesting. So what do you got to do? You got to go find a way to get in contact with your hospital or your doctor, do whatever you can to get into that record, and they probably won't even show you all of it. And then you have to ask them to fax this damn thing over... by the way, you've got to pay for the fax... fax this thing over to England, so that the doctors over there know what your history is.

Alexander McCaig (01:45):

Why is it that the record can't just be in the hands of the individual, so I can just bring it with me?

Jason Rigby (01:51):

My sovereignty is.

Alexander McCaig (01:53):

You don't have sovereignty over your data at that point. So you don't really know how... how is it truly private, if the ownership is not in your hands? It's private to the hospital. It's not private to you. That's your record. That's your health or your sickness.

Alexander McCaig (02:06):

So much like my ability to move from state-to-state here in the United States, I have the ability to pick up and move and bring my stuff with me. I should have the ability to do that with my healthcare also. I should be able to take my record wherever the hell I want to go, not go beg for it to be shifted from one healthcare provider to the next.

Alexander McCaig (02:23):

And that's why the interoperability is so limited. That's why things end up getting siloed, because it's too difficult, too labor-intensive, too much red tape to actually move this thing. It lacks fungibility. That's an issue.

Jason Rigby (02:36):

Yeah. And in the Office of the National Coordinators... we're reading this article... on a Forbes article... "ONC, the federal agency at the helm of Health IT, finalized rules in March 2020, that begin to break down these barriers by instituting a major shift to improve patients access to data."

Alexander McCaig (02:49):

Why couldn't just patients have full access? Here's your data?

Jason Rigby (02:52):

Why do we need the government to get involved, to be the mediator between...

Alexander McCaig (02:55):

Why dude I'll tell you right now.

Jason Rigby (02:56):

We talked about that with... who's the guy that was running for President and wanting the government to be involved in our data?

Alexander McCaig (03:00):

No, I know.

Jason Rigby (03:01):

You know who I'm talking about?

Alexander McCaig (03:03):

Crap. That's how insignificant he is. I forgot about him.

Alexander McCaig (03:07):

The idea here is that they didn't want to...

Jason Rigby (03:11):

Adrian Yang.

Alexander McCaig (03:11):

Yeah. Yang. The idea is that they didn't want to give that data up, because it's too valuable to them. The insurance companies were making money. The hospitals were making money off of your data. The pharmaceutical companies were making money off of your data.

Jason Rigby (03:24):

Yeah. And in this article they talk about us being able to message... I can message somebody in China, or the Philippines, or Australia, in one second, and then ride-sharing. I can go just about anywhere and get an Uber.

Alexander McCaig (03:37):

But I can't...

Jason Rigby (03:38):

Within seconds.

Alexander McCaig (03:38):

But I couldn't grab my medical record?

Jason Rigby (03:39):

Online banking.

Alexander McCaig (03:40):

Yeah.

Jason Rigby (03:41):

That can be anywhere in the world. Log on, make a transfer.

Alexander McCaig (03:43):

No problem.

Jason Rigby (03:44):

Yeah. I can call American Express, have them do this or that.

Alexander McCaig (03:46):

But I got to get ahold of the right person in the hospital to fax a document over? Crap.

Jason Rigby (03:51):

To fax, Bro.

Alexander McCaig (03:52):

Dude, you know what you can do with TARTLE?

Jason Rigby (03:54):

It's so 1988.

Alexander McCaig (03:54):

Let me tell you about how this is solved. With TARTLE, we allow people to access over 85% of providers here in the United States, so they can grab their healthcare record and have it in their control, all the time. So if you go to a new provider, you can share it with them. If a pharmaceutical company wants to research you, they buy it from you. They don't buy it from a hospital. Does that make sense?

Jason Rigby (04:19):

Yeah, I know.

Alexander McCaig (04:20):

It's your asset, dude. You should be able to carry that with you.

Jason Rigby (04:24):

And we have to understand HIPAA talks about data a little bit, but that was 25 years ago.

Alexander McCaig (04:30):

They didn't have this thought in mind.

Jason Rigby (04:31):

No.

Alexander McCaig (04:31):

They didn't know about TARTLE at this time. They weren't thinking about it. I wasn't thinking about it. Nobody was. But now, listen, if the information is about you, that's yours. If you've walked into the hospital that afforded them the opportunity to create that data, through your interaction in there, that's your information. That's your life. It is not for them to decide what to do with it and how it should be given or shared.

Jason Rigby (04:55):

Well, even the healthcare sector, it's talking about that they follow in the footsteps of the consumer tech world. So that's what they're doing with your data. They're, "How can we monetize this?"

Alexander McCaig (05:04):

Yeah. Wrong. It's not for you to monetize. It's for an individual to do what they want.

Alexander McCaig (05:08):

If we actually want to increase the amount of research we have with healthcare data, you have to give it to people. You can't put it in these centralized systems that are a menace to get into, where people are trying to lock down that value for themselves. It has to be opened up. Truthful things have to be shared.

Jason Rigby (05:26):

Because we don't need... and the article talks about Facebook having a 30-page Data Policy, Terms of Service and stuff like that. And they said, "This is the risk that we're going to take in entering this realm." This is where these healthcare companies are wanting to go.

Alexander McCaig (05:40):

Yeah. And the epic, the CEO...

Jason Rigby (05:42):

So it creates silos.

Alexander McCaig (05:43):

She wants the biggest silo of all. She doesn't want people to be in control of their healthcare information. She has no interest in that. Why? Because you're making a mint off of it, with your little epic online portals and all that other stuff. Don't be a hypocrite. Don't say that you want the best health for people, if you're also trying to take the power and the freewill over me, away from them, to do what they need to do. You're making the choice for them. There's nothing healthy about that decision, in the aspect of a doctor, or some sort of agency, if they're making all the choices for you.

Alexander McCaig (06:15):

It's your life. It's your healthcare information. You have the ability to do whatever you want with it. And on TARTLE, if you want to sell that info.

Jason Rigby (06:21):

Yes.

Alexander McCaig (06:22):

If you want to share it with researchers that actually care. If you want to elevate the pace at which we solve things, in this world, and in our future, you do that by grabbing your healthcare information on TARTLE Marketplace and saying, "It's mine. I'm going to share it with who I choose to share it to, when I want to do it."

Jason Rigby (06:38):

Yeah. And they say this in the article, "The guiding principle should continue to focus on the patient, rather than the large incumbent's attempt to control the dialog."

Alexander McCaig (06:46):

That's precisely correct. That's what it always is.

Alexander McCaig (06:49):

The healthcare system has become the dictator for the person. You have no power. You've given up your power to the State. You've given up your privacy to the State. Why do I have to give up all my rights as a human being, so that you can come to say, "Oh, but look what we're doing for your health care?" You're not doing anything for my healthcare.

Jason Rigby (07:06):

No.

Alexander McCaig (07:07):

The United States is getting more sick. People are becoming more unhappy. We need to take care of them. You need to empower people. You need to give them back their right to that information.

Jason Rigby (07:17):

Yeah, and the guy that wrote this, Matthew, he says, "So much of the public health efforts to reduce disparities, such as social determines of health. This will have to be a comprehensive effort, as seen over time, that takes special care to support and protect the most vulnerable among us."

Alexander McCaig (07:31):

You know who's most vulnerable? Human beings.

Alexander McCaig (07:34):

If a dictator is coming in, and they're deciding for you, you've made all human beings vulnerable. All of them. You're not worried about the business. You're worried about writing research papers that make you look good, but why can't somebody else somewhere research that same exact data? Why do you have to hold your hands on it in a total choke hold, and not let it go? You have a death grip on it. You have a death grip on it. It is ice cold. You need to give it back to the people.

Jason Rigby (08:01):

Yeah, and I think this last statement, we'll close out in this, because I think it's so beautiful, and this is why we need TARTLE. "We are at an inflection point. The pandemic has proven the dangers that can arise with the lack of data and knowledge sharing."

Alexander McCaig (08:14):

That's precisely correct.

Jason Rigby (08:15):

We're at this tipping point right now where data sharing saves lives.

Alexander McCaig (08:21):

Why do people not get that? It's information on a life, and if you can share truthful information, then researchers can bring all their brain power and resources together, all across the globe, to solve it at a rate faster than some research hospital could do it one-off to make themselves look good in the news.

Jason Rigby (08:36):

I want to know how many research hospitals, how many healthcare... how were they...

Alexander McCaig (08:42):

Resourcing their data?

Jason Rigby (08:43):

No, no, no. Did they go to the patients and say, "Hey, we have this research hospital that wants to use your COVID information. We want to purchase that data from you?"

Alexander McCaig (08:55):

Dude, none of them were doing that. Zero. Zero. They're trying to take anonymized data. Why do you think Google's trying to wrap their hands around all this stuff? Buying-

Jason Rigby (09:05):

So they probably turned around and said, "No, we can't have that data. It's siloed to us."

Alexander McCaig (09:10):

That's ours.

Jason Rigby (09:11):

So guess what just happened?

Alexander McCaig (09:12):

"Oh, it's on our servers." Oh, wait a minute. They give you some sort of thing. "Our IT Department can't let that out."

Jason Rigby (09:16):

Personal privacy data. So now, what if that patient wanted to get paid to be able to help research?

Alexander McCaig (09:24):

Or pay their medical bills? If they were sick and they created a record and they can share that to help pay back towards the cost of what they created. Well, isn't that a fantastic full-circle approach?

Jason Rigby (09:36):

Who wins in that? Humanity.

Alexander McCaig (09:38):

Humanity wins.

Jason Rigby (09:39):

The individual.

Alexander McCaig (09:40):

Oh my gosh. Life wins. Evolution wins. Give people back the power... give people the ability to share their knowledge and share their truth.

Jason Rigby (09:50):

So if a healthcare company wanted to have a conversation with TARTLE.

Alexander McCaig (09:53):

Yeah.

Jason Rigby (09:54):

Maybe they're not ready to be a buyer yet, but they want to have a conversation. How can they do that?

Alexander McCaig (09:58):

They can email us or they can call (833) 243-3282, which is 833-BID-DATA. Or you can sign-up on TARTLE.

Jason Rigby (10:08):

And be a buyer, yeah.

Alexander McCaig (10:09):

And look at stuff, right? Or you can buy... there's many options you can take. You can message us anywhere.

Alexander McCaig (10:15):

Hello. We're here. We're willing to help. And we want to give you the best information possible, because it's not about us. It's about humanity.

Jason Rigby (10:21):

Yes. Thanks Alex. Appreciate it. Everybody go to TARTLE.co. If you're a buyer of data and you want to know more information, TARTLE.co. Click on, you have Seller Login, Buyer Login.

Alexander McCaig (10:32):

Yeah.

Jason Rigby (10:32):

And you can register right there. Take the next step.

Alexander McCaig (10:34):

Red pill, blue pill.

Speaker 1 (10:35):

Thank you for listening to TARTLEcast, with your hosts, Alexandra McCaig and Jason Rigby. Where humanity steps into the future, and resource data defines the path. What's your data worth?

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