Revelations about the National Security Agency (NSA) gaining access to email, social media posts and other digital data unleashed outrage and set off a sea change in how we think about digital relationships and data. Many ask what it will mean for health care, where intensely personal data resides.
While the security of personal data is a concern, we might consider being more outraged that our nation’s health care system doesn’t have the will and wallet of the NSA to sift through reams of data and make profoundly important connections and discoveries.
Political Will and Wallet
Before 9/11 we had plenty of intelligence data, but the US was not equipped to decipher it all. September 11 changed everything. Suddenly we had monster motivation. Our country’s security was at stake and our government was going to do what it needed to protect us, marshaling the advances in data mining and analysis needed to decipher massive amounts of intelligence data.
Can we say the same thing about health care data and the threats rising costs, disease and inadequate care present for economic security and national health?
In the case of the NSA, secrecy is by design and people are rightly debating whether the agency action was appropriate. In health care, data collection and analysis is not spying, it’s the future standard of care. The difference that makes all the difference is the imperative for patients to have full control over their health data and the ability to put the data to work to improve health.
Why is no one up in arms about health care not having the same ability to connect disparate data sources and mine through unstructured data to analyze and solve problems that the NSA has? A powerful group of patient advocates are agitating, but they need our help. Private industry is not investing in an open-sourced health data system, because ensuring that others can access and use “their” data means giving up a competitive advantage. Are we protecting privacy or profits? Who wins and loses in decisions to withhold or release health data?
In the debate over how much health data to set free and how to go about doing it, there is an “opportunity cost” balance to strike.
While perhaps providing more opportunities to protect privacy (which is debatable), hoarding or siloing health data comes with a cost. It keeps us in the dark about our medical, diet and exercise history, and genetic predispositions. Under a more “open sourced” system, if patients “owned” this personal data they could compare it to others in their demographic, in their neighborhood, and even information about the cost of care, provider performance, air quality and access to healthy food.
Just a few weeks after the Centers for Medicare & Medicaid Services (CMS) released hospital charge data for the first time ever, HHS Secretary Kathleen Sebelius announced the release of even more data on hospital outpatient charges and Medicare spending and utilization. In addition, the Office for the National Coordinator for Health IT (ONC) released additional information on the adoption of electronic health record (EHR) systems used across the country.
The data may be starting to become available, but is it actually going to be useful to patients?
We don’t know what we don’t know
The Robert Wood Johnson Foundation just launched a contest to encourage technology developers to create the best way to help consumers make sense of a huge database of hospital prices published by CMS. With the first release of CMS pricing data, it became clear that we don’t know what we don’t know.
Speaking at Datapalooza this month, Athena Health CEO Jonathan Bush said we have enough data to embarrass, but not to make decisions that save money and improve care. He called for CMS to release the CMS paid claims data to get a more complete view of the cost picture.
Chances are that as we release more data, we will discover more blind spots and determine which combinations of data help us advance. Writing in a LinkedIn post RWJF CEO Dr. Risa Lavizzo-Mourey said:
“I believe such information management projects can be as or more transformative for an individual’s well-being than a new drug or surgical technique.”
We couldn’t agree more.
Health care likes to think its data is “big.” It is. The largest processor of health care information globally handles about 40 billion healthcare transactions about patient treatments annually. That’s 17.5 Petabytes of data – more than the New York Stock Exchange and six times the size of Walmart transactions.
If you think that’s big, consider the NSA’s galactic quantity of data: well over 3,000 times more than health care’s largest processor. That amounts to 12 quadrillion songs on your iPod. Storage of those songs would require 2,000 times more than the entire amount of devices that Apple has ever sold (600 million).
Volume alone does not equal insight. Like the forensic NSA investigators, we must gather as much information as we can and then start connecting the dots and finding the proverbial needles in haystacks.
Data: bring it. Own it. Master it. Don’t be afraid of it.
Mark Tobias (@PanthTech) is president of Pantheon, which combines technology expertise and a deep knowledge of health care, education, and social impact markets to provide online technology solutions for nonprofits, associations, and government.