PX: How Can We Share Healthcare Data If We Can't Agree On Who Owns It?

Big data yields big insights, big value, and a big competitive edge. So why would the corporations, health systems and other entities that collect big data want to share it?

The answer: They don’t. At least not yet. The incentives aren’t there, and that’s causing big, preventable problems that ripple across the healthcare landscape. Moreover, we can’t seem to agree on who owns data. Those who produce it are locked in a cold war with those who collect it, and it’s unclear who is likely to prevail in the long term.

So, how can we incentivize the data-sharing needed to improve patient outcomes if we can’t even agree on who owns it? Our expert panel weighs in.

Leveraging Big Data and AI in the Hospital of Tomorrow

A Healthcare Analytics News® Peer Exchange®

Segment 2/11

Kevin R. Campbell, M.D.: One of the things that frustrates me about big data, or data in general, is you have one pharmaceutical company that has a ton of data on a subject. You have another that has a ton of data. They’re different data, but no one shares it. And if we could get to a position — I realize this is a capitalistic society — where we could share this big data, maybe we innovate faster. What do you think, Dr. Albert, some of the potentials for sharing big data and working together? Is that just pie in the sky? Is that never going to happen? And if it does, how can we do that and still remain true to our capitalistic roots?

>> Watch the First Episode: What Is Big Data and Why Does It Matter?

David E. Albert, M.D.: Kevin, when they say, “It’s not about the money,” it’s all about the money. Well first of all, in the last 15 years, hospitals were essentially forced by the federal government to implement electronic medical records. Before that —If anybody remembers the storage rooms that looked like something out of “Raiders of the Lost Ark” that went on forever with paper charts and carts — nobody wanted to do it, for the expense, for the problems, for the decrease in productivity; the things that actually happened. What we’re going to learn is that we are collecting a lot of data but we’re not using that data. You hardly ever see anybody using it. So, unless the federal government, the NIH [National Institutes of Health], the Veterans Administration begin to push people, companies see it in their best interest to not share data. So, unless there is a reason, an enforced reason, I think it will be hard for pharmaceutical A company to work with pharmaceutical B, or medical device A company to work with medical device B company, because everyone is always, my company included, looking for an advantage.

Kevin R. Campbell, M.D.: I agree with you. Go ahead, I’m sorry.

Geeta Nayyar, M.D., MBA: I completely agree with Dave. And I think that’s going to be what ultimately shifts the environment in health technology. It’s just like the federal government-mandated EHRs [electronic health records]. Now the mandates will come for interoperability, opening APIs [application program interface], HL7s [Health Level Seven International]. I mean, the only reason we’re seeing these things happen is because the federal mandates continue. And I think that that is unfortunately the only way that this will happen, because there’s just no reason for all of the different stakeholders in the sandbox to play together.

David E. Albert, M.D.: I lived that reality in electrocardiography [EKG]. A company had basically a monopoly position in managing EKGs in major hospitals. And until the government basically said, “Every EKG will be in this format — DICOM [digital imaging and communications in medicine],” an open imaging format standard. They had you, basically you had to buy the razor blades (EKG machines), from them because they had sold you the razor, and only their razor blades would fit into their razor. And so that’s changed, and it was the government that forced that change, and that upset their business model a little bit.

Kevin R. Campbell, M.D.: I think that we can also leverage professional organizations, and one example is American College of Cardiology [ACC]. I sit on a committee there where we have actually begun a push for open access to data. In other words, if a company wants to come in and do a study that is going to be adjudicated, or sponsored, or facilitated by the ACC, that data is going to be open to everyone. So, I think we as physicians, as entrepreneurs, as healthcare advocates, as experts in this field, we have to advocate for this open data. We certainly need regulatory advocates on Capitol Hill. And I think ultimately maybe we’ll get there. I do share Dr. Albert’s concern that we’re not going to get there easily, but I want to bring us back.

John Nosta, B.A.: Can I jump in and interrupt a little bit?

Kevin R. Campbell, M.D.: Absolutely.

John Nosta, B.A.: Because we have government, hospitals, and physicians — I would expect that of the three of you as being part of that club — but Dave, in that big chart room 20 years ago, I remember it well, was the notion of someone taking their own EKG on the radar? Not really, and I think you know better than anyone that today a patient can take their own EKG. The nature of data ownership might fundamentally change, such that the consumer may have a role in data sharing.

David E. Albert, M.D.: No question about it.

John Nosta, B.A.: I think that’s a real interesting wrinkle now that I own my data, and that I may be the arbiter of sharing, not the government or not “Big Pharma.” So, I think it’s kind of an interesting dynamic and in your direction.

David E. Albert, M.D.: You’re absolutely right. Hospitals are still today arguing that they own the patient’s record, and they charge large fees to copy each page of a record or print out each page so you can take it, they can’t just send it, and that’s obviously an impediment. So I think what we’re going to find out is, it’s going to be a consortium — maybe not an official one — of patients, the government, organizations like the American College of Cardiology or the American Heart Association [AHA], who sponsor and finance research. All of them will get together, probably with the federal government as a motivator, to help provide open data.

John Nosta, B.A.: Exactly. If oil is found on my property, I can lease the land. I can sell that oil.

David E. Albert, M.D.: Absolutely.

John Nosta, B.A.: And I am the creator of data. So perhaps, data should be considered property and consider it in that context of almost a legal discussion. I think sharing is going to become very, very interesting. And the reality is it might become more complex in the short term because these issues will emerge.

David E. Albert, M.D.: Well this is important, and I think it is property today. It’s intellectual property, and it’s very valuable. So, we’re back to the money.

John Nosta, B.A.: Yes.

Geeta Nayyar, M.D., MBA: The consumer is the only stakeholder in the system. It has a reason to share, right? And it’s particularly when — I’m a mom, I have a 6-year-old — moms who have kids, at the pediatrician, let me tell you, they have all the information. They have the vaccine, we have the medication history, we have it all. So, there’s no one that has a better stake in the game to share the data, they just need the tools to get it. Whether it’s a portal, where there are any number of systems out there that help us from a patient engagement standpoint.

John Nosta, B.A.: And I know, Kevin, you’re trying to get in here, but the lead may not be taken by healthcare. We’re looking at transportation, at purchasing, at so many elements of our lives as consumers. Those datasets now are becoming extraordinarily valuable. So, I think we may take a nod or a lead from some other industry to start managing data in new ways. Picasso said, “Good artists borrow and great artists steal.” Maybe it’s time for healthcare to look outside to FinTech [financial technology] and retail as ways of managing data and things like that.

Kevin R. Campbell, M.D.: I think most of this is going to be driven by the patients. I very much appreciate the comment that you made because I think that for 10 years there have been patients out there, or more, that have demanded their data from Medtronic, from their ICDs [implantable cardioverter defibrillator], or from the pacemakers. We are still in this paternalistic society within healthcare, and particularly the healthcare-related industries, where we know better than you do, poor little patient, and that’s not the case, and we must empower patients to use and to access and to own their own data, because they do. And I have fought that fight many, many days; many, many nights, and I think these patients deserve their own data, and they deserve the fruits of the labor that come from this data.

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