Predictive Prevention: Why do we give our data to Angry Birds but not health providers?
For health care providers to figure out the best way to make good use of consumer information to drive health trends in the right direction, they need to copy Angry Birds.
People have downloaded that game more than 2 billion times. Every time someone does, they consent to allow Rovio Entertainment, the company that makes the game, to use information about them for whatever purpose the Finnish company deems fit. This doesn’t seem to bother anyone. And yet, when it comes to health science or health care, we get squeamish.
This is why alarm bells are being set off by Bloomberg BusinessWeek reporting that shows how medical providers are trying to mine consumer spending information to look for areas where health can be improved. Shannon Pettypiece and Jordan Robertson wrote their first piece in June and a sort of summary of the story last week:
[Carolinas HealthCare System] purchases the data from brokers who cull public records, store loyalty program transactions, and credit card purchases. … Information on consumer spending can provide a more complete picture than the glimpse doctors get during an office visit or through lab results, says Michael Dulin, chief clinical officer for analytics and outcomes research at Carolinas HealthCare.
At first glance, that may sound troubling. Scary even, especially if you have had a bad experience with an insurance company or a health care entity. But listen to what Dulin (and others) are planning on doing with that information.
The Charlotte-based hospital chain is placing its data into predictive models that give risk scores to patients. Within two years, Dulin plans to regularly distribute those scores to doctors and nurses who can then reach out to high-risk patients and suggest changes before they fall ill. ‘What we are looking to find are people before they end up in trouble,’ says Dulin, who is a practicing physician.
Within a few days of that story running, a search for it turned up an image of President Obama with the phrase “Big brother is watching you” over his face. Stories popped up with headlines like “Crossing the creepiness line” and “Your hospital is spying on you through your credit card activity. Did you approve of this?” Veronica Combs at MedCity News wrote:
Does anyone remember Snowden? Does anyone still think big institutions can manage enormous sets of data carefully and ethically? What are the chances that the bottom line will win out over individuals?
The odd thing about the pushback is that this information about consumers was legally obtained and is being legally provided to the health care providers. In fact, some of the information could have come from downloads of games like Angry Birds. Here is some of what the Angry Birds privacy policy states:
Personal data may also be used for the planning and development of Rovio’s business and services and to measure the amount of customers using the service. In addition, Rovio may use and disclose personal data contained in the data file for justifiable purposes (such as direct marketing, distance selling, other direct advertising, opinion polls or marketing research) in accordance with the Finnish Personal Data Act, the Finnish Act on the Protection of Privacy in Electronic Communications … and other applicable legislation.
“Ah ha!” you say. “Rovio wants to market its fun games to me! I’m OK with that. But I don’t want it to let my data be used for health research or health care.”
And, at first glance, you might think Rovio doesn’t share your information with other companies, but, like many other privacy policies, Rovio’s starts with a boilerplate declaration that it “does not disclose personal data contained in the data file to third parties on a regular basis.” Then it follows up with this:
Personal data may, however, occasionally be disclosed in accordance with the laws of Finland. Further, personal data may be disclosed for research and marketing purposes (including direct marketing) provided that you have consented to this.
How much information do Rovio and other companies really collect about you anyway? The quality and quantity of information is quite expansive, kind of like one of those Angry Birds slingshots. The policy states that it collects:
Your contact information such as e-mail address, delivery address and other contact information … certain personal information regarding your order, such as payment information, ordered products, shipment method and Product order number. Rovio may also collect other personal information that you have submitted to Rovio in connection with the use of the service.
Did you read that last sentence? “Other personal information that you have submitted.” Think about how many apps you have on your phone and whether they’re synced up to your email contacts or to your mapping tool. How much do they know about you? Only the names and addresses of all your friends and family and every place you’ve been since you first bought a smart phone. Rovio also says that it might bring in another company to track your visits, actions, and movements, both within the game as well as “movements to the service from another website and movements from the service to another website.” It also tells you quite clearly that it is installing cookies – little data monitoring devices – on your computer that create a direct information pipeline from your computer to the company.
But you have to consent to all of this, right? We do so all the time, often many times a day, when we click “I agree” or even when we hit “Download,” because doing so indicates that we have read and understood the privacy policy or data sharing policy or any other consent that the company wants from us.
We are constantly clicking on “I agree” when we want something fun or momentarily useful and should know full well by now that our purchase or download information will be used by some third, fourth, or fifth party at a later time for a much different purpose.
Why should it be upsetting when the purpose is an attempt to improve our health? I asked more tech-minded friends of mine, the kinds of people who have an app for everything on their phones, about the difference between agreeing to all the data spying that comes with a download and yet being more sensitive when it comes to health care. The main distinction people made is the difference between consumers buying a product in a wide-open, anonymous-feeling market place and patients seeking healing in a one-on-one, behind-closed-doors relationship. As one friend put it:
I guess those interactions feel sacrosanct and having someone else disclose information (although I've implicitly agreed) to my doctor/priest/counselor feels more like a violation or intrusion. That said, I would be willing to opt-in to something like this because I think it does give incentive to me to make healthier choices with the help of my doctor.
To get people to opt in, what can health care and health research learn from Angry Birds? Is the key to create a game where people use animals as ammo as the incentive for allowing health care providers or scientists to gather health-related data from consumers? Or can the incentive be something creative but not quite as entertaining?
The kerfuffle over what’s happening in North Carolina has echoes in the debate over scientists making use of Facebook data. I’ll write more about that in my next post.
Photo by Garrett Heath via Flickr.