In the past, the healthcare industry treated wearables as irrelevant, distracting or worse. But over that last year or two, things have changed, with most health IT leaders concluding that wearables data has a place in their data strategies, at least in the aggregate.
The problem is, we’re making the transition to wearable data collection so quickly that some important privacy and security issues aren’t being addressed, according to a new report by American University and the Center for Digital Democracy. The report, Health Wearable Devices in the Big Data Era: Ensuring Privacy, Security, and Consumer Protection, concludes that the “weak and fragmented” patchwork of state and federal health privacy regulations doesn’t really address the problems created by wearables.
The researchers note that as smart watches, wearable health trackers, sensor-laden clothing and other monitoring technology get connected and sucked into the health data pool, the data is going places the users might not have expected. And they see this as a bit sinister. From the accompanying press release:
“Many of these devices are already being integrated into a growing Big Data digital health and marketing ecosystem, which is focused on gathering and monetizing personal and health data in order to influence consumer behavior.”
According to the authors, it’s high time to develop a comprehensive approach to health privacy and consumer protection, given the increasing importance of Big Data and the Internet of Things. If safeguards aren’t put in place, patients could face serious privacy and security risks, including “discrimination and other harms,” according to American University professor Kathryn Montgomery.
If regulators don’t act quickly, they could miss a critical window of opportunity, she suggested. “The connected health system is still in an early, fluid stage of development,” Montgomery said in a prepared statement. “There is an urgent need to build meaningful, effective, and enforceable safeguards into its foundation.”
The researchers also offer guidance for policymakers who are ready to take up this challenge. They include creating clear, enforceable standards for both collection and use of information; formal processes for assessing the benefits and risks of data use; and stronger regulation of direct-to-consumer marketing by pharmas.
Now readers, I imagine some of you are feeling that I’m pointing all of this out to the wrong audience. And yes, there’s little doubt that the researchers are most worried about consumer marketing practices that fall far outside of your scope.
That being said, just because providers have different motives than the pharmas when they collect data – largely to better treat health problems or improve health behavior – doesn’t mean that you aren’t going to make mistakes here. If nothing else, the line between leveraging data to help people and using it to get your way is clearer in theory than in practice.
You may think that you’d never do anything unethical or violate anyone’s privacy, and maybe that’s true, but it doesn’t hurt to consider possible harms that can occur from collecting a massive pool of data. Nobody can afford to get complacent about the downside privacy and security risks involved. Plus, don’t think the nefarious and somewhat nefarious healthcare data aggregators aren’t coming after provider stored health data as well.