Importance of Data Sharing in Healthcare

Andrew L. Pecora, MD, CPE: The big issue we have in healthcare, unlike in other industries, is HIPAA (the Health Insurance Portability and Accountability Act) — healthcare privacy. There’s something called “trade secrets.” One hospital competes with another, even though they’re [both] not-for-profits. I could never quite figure this out, but they behave very much like for-profits in their competitive landscape.

Obviously, the patient owns their own information, but who owns the aggregate of information? This is a big debate right now. So, if I’m a hospital system and I have 5000 patients in my database, or if I’m a company, an information technology company, and I own an electronic health record and I have that information in my database, not the individual patient, who owns the aggregate data? From your perspective, who should have access to it? De-identified [data], of course, because obviously, you’ve got to protect privacy. Is that a trade secret, or is that something that should be in the public domain?

Rena M. Conti, PhD: I believe that putting information in the public domain is crucial to getting innovation to really work in this space. And I also believe, very strongly, that patients are ultimately the owners of their own data. So I think that what we will hopefully see is that we’re in this temporary period, or in a transition period right now, where there are a lot of companies that want to hold on to certain pieces of this data and try to monetize it. But, over time, I think we’ll see new information systems come about that put patients more in the driver’s seat of actually holding on to data and being able to provide it to different providers that are taking care of them. And government does have a role in setting regulations to protect patient privacy and [provide] fair playing fields for providers to start talking to each other and actually sharing data, as opposed to, again, hoarding data for their own financial purposes. We’ll see.

Andrew L. Pecora, MD, CPE: So let me ask you the question in a different way and I’ll use an example. Right now, if the federal government said to Pfizer, Johnson & Johnson, Celgene, and Amgen, “Guess what? All the data you have is now going to be put in the public domain. Everything you have about every clinical trial, even in the middle of trials, is going to [be publicly] known. There really are no trade secrets.”

Put that in the context of the federal government which says to the University of Whoever, Company X, [an] electronic medical record company, or a data analytics company, “All of your data is going public. De-identified, of course. So it’s not tied to a person, but you don’t own that. That’s the public domain.”

How would that work? I struggle with this and I think a lot about it. I would like both of your opinions. I think a lot of people struggle with this. So why is it okay for Boeing to keep its information private about what it’s doing, and for Amgen to keep its information private about what it’s doing? It has to tell the FDA, but that’s confidential. That’s still not in the public domain. But, yet, if a company wants to create a new business model where information is monetized, there’s the pro and the con of that. How do you look at it?

Brenton Fargnoli, MD: I think it’s a great question. The first piece being the government’s responsibility to set up the framework to facilitate those solutions. Whether it’s updating of certain laws or incentives around data exchange, that type of framework is going to be very important for the private industry to solve [problems] within that [framework]. And with the innovation we’re seeing both in immuno-oncology and technology at large, it’s challenging for the government to keep up with that.

The second piece being, I think, the answer usually lies when you bring it back to a patient. So here, we have a patient who is actually the most interoperable part of the healthcare system. The patient is actually going every single place. So, finding a way to engage them in the information [sharing] is key.

And I want to bring up [the third piece] — there’s a subtlety between information and usable data. A patient, for example, might get PDFs, CDs, and all of this information. If there’s interoperability, or partnerships, between hospitals, those CDs and those PDFs will be sent over. That’s 1 exchange of information. But then there’s a higher level order of information, which is processing structured data and looking through those PDFs and pulling out information so that it’s searchable and minable. And that’s a lot of work that various organizations are doing, and they’re doing that to drive incentives back down to the patient. So I think that’s another important piece of information. But when we talk about information exchange and data exchange, it’s obviously a central tenet of coordinated, important care. But all information is not equal. If 1 hospital is interoperable with another, they’re either getting unstructured information, which takes a long time to read through just for 1 patient, let alone millions of patients, or it’s structured for certain data points. And so, looking at that level of granularity of the data, I think, is important to these discussions.