Name: Insights: Who Owns And Protects Our Medical Data?
Uploaded: 2020-03-25
Duration: 5 min 36 s
Description: New technologies are generating enormous amounts of data about our health, but who keeps and safeguards this information? (April 2019)

 [MUSIC PLAYING] MICHAL LEV-RAM: In an ideal world, how do companies go about making sure that privacy and security are, first and foremost, top of mind when they're developing these technologies? And I know you've talked and written about how patients, consumers, should own their data. What does that world look like? And is that the only solution? ERIC TOPOL: I think, ultimately, it's the only solution, that people have to own your data. Because what we're seeing now, of course, is the worst case scenario where data is sold, it's stolen, hacked, cyber thievery is rampant. And our medical data is at least 5x the worth on the dark web as our personal financial data. So we have a situation now which is not acceptable. And if you talk to cyber gurus, they will say, you have got to get it down to a unit of one or the smallest possible units. Whereas, of course, it sits on massive servers that have indeed been hacked. And so many health systems have been held hostage for their data. So that requires a fundamental change. We've seen it in other countries like in Estonia, and Switzerland, and other countries are adopting this ownership model, where people can share parts of their data with certain-- whether they be physicians or medical research projects or that sort of thing. Eventually we will go there because this will have to be considered a civil right. That is your data, you paid for it, and all the other things that it could change your life. But in the era of AI, it's the inputs. If you don't have all this data, which is, in the US, it's all over the place from various doctors and encounters throughout one's life, then you have a compromised input and you can only expect so much as an output. So that's why we have to move to a different method and we're a long ways from that today. JESSICA MEGA: If you think about a pacemaker, or an ICD, or a continuous glucose monitor that is giving medically great information, to a person who may change their dose of insulin, for example, we have to be 100% sure that this is actually their data. So again, I think understanding cybersecurity in this age is critical, and you're seeing groups across the board championing that. I think on the ownership, I would even say and take it one step further, how do you actually give value back to people? So not just surfacing a lot of medical data, but saying, this is what it means for you. Here is your continuous glucose data. You ate a certain food and here's how you can make healthy choices. I think the more we think about, not only the data, but value, that's an ambition that we've had from the beginning. MICHAL LEV-RAM: And would you say, I mean, are you taking steps in that direction early on to make sure that that data is owned and stored with people themselves? JESSICA MEGA: So if you look at our baseline initiative that we started several years ago in conjunction with Duke, Stanford, and the American Heart Association, as well as volunteers who sit on the committees, the idea was, how can you ethically return information to people? And so that has been a philosophy that is something that underscores the work that we do. ERIC LEFKOFSKYl: My take on it in general-- MICHAL LEV-RAM: It's not that obvious, I mean, we don't own most of our data that's out there. ERIC LEFKOFSKYl: I think the Supreme Court has weighed in. But the bigger issue, I think, is coming from kind of the tech world, actually, this is one of the viewers I think the federal governments has done a decent job in terms of defining PHI, and there are laws like HIPAA, there are a litany of requirements in terms of what you can do with identified data as opposed to de-identified data, none of which, by the way, exists in the non-health world. We have breaches all the time in e-commerce of millions of patients where the credit card data-- and if you had that same breaches as a health care a company, it would be radically different. So I agree, we have a long way to go. But in general, I think this is an area where we've done better than we have in some other areas. And I think the real challenge is, one of the biggest problems you have as a patient in terms of ownership of your data is what do you do with the data? First of all, it's a huge amount of data. And second of all, it's largely unstructured. And what ends up happening is you, as a patient, when you get your hands on your data, you're often e-mailing it to a physician. And they have no ability to import it back into their EHR, EMR system. So there is no interoperability or transferability of this data. And so I think even though a patient should own their data, and they certainly have a right to it. And even the provider should be able to house that data seamlessly. Probably the bigger challenge we all have to tackle is the underlying infrastructure that allows us to move around this kind of rich, clinical data, seamlessly across providers, across physicians, all of which is entirely today broken and siloed, but again, is likely to be fixed by these really massive technology currents that are just there. So with NLP and OCR and all these great technologies, we will likely be in a place in a very short number of years where this data can be structured on the back end and moved between an Epic, or a Cerner, or an Allscripts, or an [INAUDIBLE],, or pick your provider. And that I think is going to be one of the biggest unlocking of patients being able to port their data from one doctor to another. 

Insights: Who Owns And Protects Our Medical Data?

Uncategorized

Who keeps and safeguards this information?

Who Owns And Protects Our Medical Data?

New technologies are generating enormous amounts of data about our health, but who keeps and safeguards this information? (April 2019)

in an ideal world. How do companies go about making sure that privacy and security are first and foremost, top of mind when they're developing these technologies? And I know you talked and written about how patients consumers should own their data. What is that world look like? And is that the only solution, I think, ultimately, is the only solution that people have to own your data? Because what we're seeing now, of course, is the worst case scenario. Where date is is sold, it's stolen packed, cyber thievery is rampant and our medical data is at least five X. The worst on the dark Web is our personal financial data. So we have a situation now, which is not acceptable. And if you talk to cyber gurus, they will say, You got to get it down two units of one or the smallest possible units. Whereas, of course, it sits on massive servers that have indeed been hacked in. So many health systems have been held hostage for their data, so that requires a fundamental change. We've seen it in other countries, like in Estonia and Switzerland, and other countries are adopting this ownership model where people can share parts of their data with certain, but they be physicians or medical research projects, that sort of thing. Eventually we will go there because this will have to be considered a civil right. That is your data. You paid for it and all the other things that it could change your life. But in the era of a I, it's the input. If you don't have all the data which is in the US, it's all over the place from various doctors and encounters throughout one's life. Then you have a compromise input and you can only expect so much as an output. So that's why we have to move to a different method. And we're a long ways from that. Today. If you think about a pacemaker or an I P D or continues glucose monitor that is giving medically great information to a person may change their dose of insulin, for example, we have to be, ah, 100% sure that this is actually their data. So again, I think understanding cybersecurity in this age is critical and you're seeing groups across the board chancing that I think on the ownership I would even say and take it one step further. How do you actually give value that two people not just surfacing. Ah, lot of medical data, but saying this is what it means for you. Here is your continuous glucose data. You, uh you ate a certain food and here's how you can make healthy choices. I think the more we think about not only the data but value, that's that's a mission that we've had from the beginning. And would you say I mean, are you taking in that direction early on to make sure that that data is owned and stored with people themselves? So if you look at our baseline initiative that we started several years ago in conjunction with Duke Stanford in the American Heart Association, a swell volunteers who sit on the committee, the idea was, How can you ethically return information to people? And so that has been a philosophy that is something that underscores the work that we do my take on it In general, it's not that obvious. Well, don't own most of our data that's out there in the Supreme Court's waiting. But the bigger issue, I think, is coming from kind of the tech world we? Actually, this is one of few hours. I think the federal government's been a decent job in terms of defining pH I, and they're lost like hip. There are litany of requirements in terms of what you could do with identifying data supports the identified, none of which, by the way, exists in a non health world. We have breaches all the time. Any commerce of millions of patients with a credit card dated and if you had that same breaches of health care company radically different. So I agree we have a long way to go. But in general I think this is an area where we've done better than we have in some other areas. And I think the real challenge is, um, one of biggest problems you have is a patient in terms of ownership of your data is what do you do with the data? What a huge amount of data. And second of all, it's largely on structured, and what you end up when it's happening is you as a patient, when you get your hands on your data, you're often e mailing it to a physician, and they have no ability to import it back into their e h r E M R system. So there's no interoperability or transferability of this data. And so I think, even though patient should own their data and they certainly have a right to it and even the provider should able, How's that data? Seamlessly? Probably. The bigger challenge we all have to tackle is the underlying infrastructure that allows us to move around. This kind of rich clinical data seamlessly across providers across positions, all of which is entirely today broken and siloed. But again, it's likely to be fixed by these really massive technology currents that are just They're so with NLP and OCR and all these great technologies, we will likely be in a place in a very short number of years, where this data can be structured on the back end and moved between an epic or Cerner on all scripts on Uncle Liam are pick your provider and that I think it's gonna be one of the biggest, you know, unlocking of patients, being able to support their data from one doctor to another