Cooperative Data Ownership in the Digital Age

By Nick van Terheyden aka Dr Nick, Principal, ECG Management Consulting
Twitter: @drnic1
Host of Healthcare Upside Down#HCupsidedown

Chronicling the clinical condition is a practice as old as civilization itself. The means of recording medical data may have evolved a bit—say, from etching cuneiform script onto a clay tablet to using a smart tablet to enter notes into a digital health record—but the concept is the same: clinicians record details about their patients’ health as a means to guide future treatment.

What’s different today is the question of who owns that data—and what they can do with it.

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We have long allowed our providers and their institutions to own and manage our personal health data. And until fairly recently, patients have had little if any means to access their own data. In our new data-driven world, however, data is central to everything we do. It has an intrinsic value, just as physical property does, and that requires us to rethink the rights and ownership of our clinical data.

Hamish MacDonald is the founder and CEO of the Sovereignty Network, an organization that aims to help people control and benefit from their healthcare data. He joins me to talk about interoperability and why data sharing can help patients, providers, and the healthcare system as a whole. Below are a few excerpts.

Evolution in data storage.

“Nineteen years ago, it was technically impossible. You didn’t have cloud computing, you didn’t have devices in people’s pockets that were powerful enough to hold the data. Everything was held in institutions on a client server, and you couldn’t access that. Now, as part of the patient API rule within 21st Century Cures Act, any provider that takes CMS funding needs to have FHIR-denominated data in their data sets. And they have to make that available to the output of the patient’s choice. Since it’s interoperable, it can also be held in a smartphone.”

Why we should want our data.

“As patients, nobody has more motivation to pull together the most accurate, coherent, complete view of our data than ourselves. A healthcare institution or a clinician does not get paid for you to have the most in-depth record about yourself—they get paid to make sure the current thing you’re presenting for is taken care of. But there may be a myriad of other things that are affecting your body right now and will do so in the future. If you don’t have that 360-degree view of data, then you’re missing out.

And having the full record of your data—not just the clinicals, but also the full demographics, the psychosocial data, the lifestyle data, the environmental data, and down to your genomic data…those six pieces of data interact to create you; that’s who you are. You’re more than the sum of your clinical records sitting on some electronic health record.”

Sharing data—and sharing in its value.

“Data is now the most valuable asset on the planet. We believe that healthcare data, being inherently valuable, should be a personal asset. If you think of each person having suddenly the most valuable data set that exists about them anywhere, they can now share pieces of that data set. They may wish to donate it to a research cause they believe in. They may wish to share the whole lot with their primary care physician. They may wish to license parts of it to pharmaceutical R&D, because they fit the exact criteria for research.

“And importantly, the healthcare system does not lose out on this. The healthcare system is still getting better. Now, you’ve got an even more valuable data set you can take along to your clinician. And if it’s interoperable, then suddenly, the clinician also has access to a much richer data set than they have right now.”

About the Show
The US spends more on healthcare per capita than any other country on the planet. So why don’t we have superior outcomes? Why haven’t the principles of capitalism prevailed? And why do American consumers have so much trouble accessing and paying for healthcare? Dive into these and other issues on Healthcare Upside/Down with ECG principal Dr. Nick van Terheyden and guest panelists as they discuss the upsides and downsides of healthcare in the US, and how to make the system work for everyone.

This article was originally published on the ECG Management Consulting blog and is republished here with permission.