Big Tech: Most Consumers Dead-Set Against Sharing Healthcare Data With Tech Companies

Lately, big tech organizations have become very interested in getting their hands on large volumes of consumer health data.  While getting the data in the door and integrated is challenge enough, the bigger one might eventually be finding the money to pay consumers for their records.

This conclusion comes from a recent study administered by the University of Chicago Booth School of Business and Northwestern University’s Kellogg School of Management looking at consumer perceptions of when and why they’d share their health information.

In the survey, consumers were surveyed on whether they were willing to share their health data with Facebook, and under what circumstances.

When asked if they would share the data with Facebook without getting paid for it, almost all respondents (93%) said they wouldn’t. In addition, when asked if they would share their data at all, 88% said they simply weren’t interested in doing so.

The study also looked at what prices consumers would demand if they were selling their records. According to the survey, 26.5% of those willing to sell their data would do so for less than $1,000, roughly 13% would ask between $1,000 and $10,000, about 10% between $10,000 and $100,000, and almost 57% would ask for $100,000 or more.

Of course, these demands go well beyond what tech companies would be willing or even able to pay. Researchers note that even if consumers were willing to sell records for less than $1,000 per person, the 50 million records Google got through Project Nightingale would have cost it up to $50 million, and at $100,000 per person, Google would have to spend $5 trillion.

Companies like Google and Facebook being what they are, there’s little doubt that they’re anticipating consumer resistance to releasing their data and the demands they’d make if they decided to sell their data directly.  Even if consumers had no worries about sharing their data, keeping track of what permissions they require could be a staggeringly complex problem all of its own.

On the other hand, as the hue and cry around Project Nightingale illustrates—bringing down the wrath not only of the press and public but also ONC—big tech companies have to walk a narrow road when gathering data through partnerships. After all, it’s hardly surprising that people who don’t want to give away their health data don’t like seeing it vacuumed up from providers without their direct consent.

While the survey only posed a hypothetical question, the issues it touched on are very real. Though nobody knows yet just how to amass the data needed to improve healthcare, we’d better figure it out soon.

About the author

Anne Zieger

Anne Zieger

Anne Zieger is a healthcare journalist who has written about the industry for 30 years. Her work has appeared in all of the leading healthcare industry publications, and she's served as editor in chief of several healthcare B2B sites.

1 Comment

  • Fascinating study Anne. The irony is that patients actions are saying quite the opposite from these survey results. I think it might be how the questions were asked. Patients don’t want to generally give their information to a vendor, but if they are getting a service, then they are giving up that data to the service. It’s a subtle nuance, but an important one. We’ll give up our information to a vendor if it gives us benefit and the benefit doesn’t have to be monetary.

    I also think of the recent virtual meetup we did: Stacy Hurt commented how people with chronic conditions (and likely dying) don’t care one iota about privacy. An important perspective.

    Of course, with the coronavirus dominating our lives, I wonder how many people will be paying attention to privacy since they’re so distracted by everything that’s happening.

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