The press has been abuzz in recent months about ownership of healthcare data. It’s a thorny issue. The increasingly loud debate about whether patients, physicians, or healthcare facilities own these data masks a more interesting question: Why, all of a sudden, do we care?
Healthcare data has been around as long as medicine. But for most of that time — indeed, all but the last few years — the amount of information actually collected about any individual patient was minimal. When our “healthcare data” consisted of a blood pressure reading and height and weight measurements, nobody cared very much who owned it. It was essentially worthless.
Now, the data ownership debate is driven by an industry in flux. Healthcare is finally starting to be transformed by tech and big data. Advances in data integration, data mining, and data analysis have now made it possible to amass information from thousands or even millions of patients and to plumb those collections for new discoveries about health and illness.
This is the treasure trove that healthcare investors, insurance companies, and other stakeholders have been waiting for. It’s already making a difference in the bottom line for major medical centers and for insurance companies, which are using it to shift reimbursement to a value-based care model, in which medical practitioners only get paid, or get paid more, if patients show positive results from the care. This is why healthcare data now matters — and why everyone, including patients, wants to stake a claim.
The Index Card
At Techonomy Health in New York in 2017, oncologist Andrew Kung from Memorial Sloan Kettering Cancer Center considered the drastic change in the amount of patient data available to physicians. When he was a medical student at a hospital in the late ’80s, he recalled, he carried around an index card for each patient. “The information that I needed to know to take care of that one patient was contained on that one index card,” he said. “Fast forward 30 years … and in order for me to take care of my patients, I have to now be able to sift through gigabytes of data and find that needle in a haystack.”
The same is true beyond oncology. Even healthy patients can now have charts filled with genetic testing information, pharmacogenomic data to predict drug response, lab test results, and even patient-generated data from iPhones, Fitbits, and other tracking devices.
Steven Murphy, founder of one of the country’s first private medical practices focused on personalized medicine, is a proponent of gathering more data about each patient. But he also recognizes this approach is at odds with how insurance companies reimburse for healthcare. They do not pay doctors for the time it takes to interpret data or to educate patients about what it could mean for their health. Murphy says “data burnout” is already happening, both because of the financial challenges and the sometimes overwhelming amount of information. “You’re getting … pushback from doctors striving to go back to that index card,” he says. Looking ahead, though, he predicts patient data will continue to expand. The next big waves of information to reach physicians, Murphy says, will include biometric data about body composition as well as cardiac telemetry data, now easily produced by any consumer with a wearable device like a recent-generation Apple Watch.
Whether physicians are ready for the data onslaught or not, it’s coming. That is partly because of a U.S. government policy adopted in 2004 that paved the way for electronic medical records. When each patient’s data existed only in hard-copy charts and files, there was no way to collect and analyze it to detect broader trends. The shift to electronic records, while bumpy, was a critical step to making this information more valuable.
As that conversion was underway, innovations in tech and big data were speeding along. Now that electronic health records can be connected and queried, sophisticated algorithms are available to mine the new databases and pull out trends and patterns that could never before have been spotted.
“The whole data and technology backbone is getting reshaped quite considerably in health systems and hospitals,” says Ana Gupte, a veteran analyst of healthcare stocks. Data integration, long one of the most difficult issues in healthcare because of the siloed nature of patient information, is finally getting cracked by health systems, insurance companies, and startups like Health Catalyst, which recently reached a $1 billion valuation. These efforts focus on pulling together patient data from insurance claims, pharmacy and behavioral data, medical records, lab results, and more.
In the days of hard-copy medical records, it was virtually impossible to answer what seems like a simple question: how do patients with the same diagnosis fare under the care of Doctor Smith versus Doctor Jones? As healthcare data becomes more accessible, insurance companies are pouncing at the opportunity to move away from fee-for-service models and embrace value-based care. It will finally put to the test the long-held theory that paying for positive outcomes instead of for every procedure will reduce costs and improve care.
This shift could benefit patients, but it has hospital executives panicking about changing revenue models. Value-based care means “health systems are putting more and more of their revenue at risk,” Gupte says. They now have to get ahead of problems by integrating and mining their own data. This is why hospitals are beginning to allow third-party services to access their patient data and help them improve outcomes, boost revenue, and create profitable new services. “It truly is transformative right now,” Gupte adds.
The Ownership Red Herring
And that brings us back to the question of ownership. Now that there’s gold in them thar databases, it seems everyone wants to cash in. But Hank Greely, a law professor and bioethicist at Stanford University, argues that ownership is the wrong way to think about something so nebulous as data, to which many parties have some claim. There are the people whose bodies it came from, those who generated the data by performing a test, those who store data, and so on.
What’s more relevant is who has access to and control over data. “The consumers of data value it more,” Greely says of the increasing interest healthcare systems and insurance companies have about health data, “and the providers of the data … are getting more and more nervous about who gets access to it.” It was once assumed that healthcare data was confidential; today, between security breaches and deliberate data mining, a patient’s privacy is far from guaranteed. That’s a tension between patients and the healthcare system that won’t soon be defused.
Finally, there’s the question of cashing in. Some patients who hear about hospitals opening their data troves to outside companies feel they should get a slice of any profit. Greely says these people tend to grossly overestimate the value of any individual’s contribution to future windfalls that may result from crunching massive data sources. A single scientific discovery, for example, could require tens of thousands of patient samples or records.
After all, data alone is mostly worthless. “The data in its integrated form needs to be converted to some type of intelligence,” says Gupte, noting that patients should benefit down the road from better understanding about health. Put another way, if your hospital makes a mint from its patient records, don’t expect a giant check. Expect to eventually get better care.