We’re all generating a lot of data about ourselves and how we live day to day. There are personal fitness devices, preferences and opinions expressed on social media, details on when we’ve come and gone from the house from our security systems, and more. It isn’t just data that companies are collecting from us, but data that we are directly generating ourselves. What should we be willing to do with it and at what price?
WHO WOULD WANT THE DATA?
Let’s take the example of the data from my personal fitness device and let’s assume for our purposes that I have full control of my personal fitness data. I have downloaded it all into a spreadsheet, so in effect I do have full control even though the manufacturer probably has some claim to it as well through the terms of use agreement. What might I do with this data and who might want it?
There are a wide range of companies and organizations that would love to get access to my personal fitness data. I’m not inclined to share it, at least not for free, but I have been thinking about under what terms I’d share it and at what price. Consider a few potential scenarios where I could be asked to provide my fitness device data in order of my increasing discomfort:
1) A university researcher asks to acquire my data over time for use in a medical study to help develop a better understanding of heart disease. My data will be kept fully confidential, anonymized, and only used for that specific study
2) A data aggregator that provides data to researchers asks to acquire my data to provide it to various researchers over time for studies where the data is relevant. I will not be alerted when the data is shared, but it will be anonymized each time
3) My doctor asks for my data so he can better understand my activity level and if it is where it needs to be. He will enter the data into my medical records
4) My insurance company asks for access to the data to better assess my risk level and adjust premiums accordingly
5) A marketing company asks for the data in order to generate customized offers for me. They promise not to share my details with any other companies, but simply deliver me offers based on the other companies’ criteria
6) A marketing company wants my data and will share it freely with whoever says it will help them generate personalized offers for me
PRIVACY VERSUS PAYMENTS
The prior scenarios span a wide range of situations. Probably most readers found some to be pretty innocuous and others to be fairly invasive. I do too. In my case, I’d be inclined to only share my data for free in the first instance. In the last instance, I don’t see myself ever sharing the data. What about the ones in the middle? If I won’t share for free, will I share at a price?
I am nervous about providing the insurance company data it could later use against me after it is analyzed. However, what if they offer me $1,000 off my premiums each year? Or, what if they eventually penalize me $1,000 for not providing it? At what point does the money involved outweigh my concerns about privacy and the risk I take of having the analytics work against me? At what point have things moved from an incentive to nearly forced coercion is by the insurer?
This isn’t an easy question to answer and it gets to the heart of a big issue. Once our data is out there, we can’t be sure what will be found within it through analytics. I may be very healthy today, but what if my health declines and my personal fitness device data causes my life insurance renewal to be rejected? At some point, a price has to be put on the data and I hope that I’ll be given the option to accept or reject that price.
AVOIDING THE SLIPPERY SLOPE
One thing I do worry about is that more and more situations are arising where we are effectively being forced to provide ever more detailed and sensitive data about ourselves. Today, you can install a telematics device on your car and get a customized insurance rate. In the future, will we be refused a policy if we don’t comply? Once all of our driving history is stored at an insurance company how else might it be used for or against us? Will I get automated tickets for data that says I was speeding? Will I be forced to turn the records over to the government for purposes of being assessed a road use tax?
We need to get to a point where there are standards for data usage and a mechanism for us all to share (or not share) our data for a given purpose at a given price. It might start with data that we directly generate and own, such as the examples I included here. But eventually, I’d like to see it expand to all of the data that we generate.
Why shouldn’t I be able to have my favorite retailer provide my purchase history to someone else if I approve it? I may have to cover the cost of that process for the retailer, but that should be my choice. The important part is the freedom to be in control of our data and to benefit financially from it directly if desired. As of today, it seems everyone else profits from our data but us.