Institute For The Future

The Future of the Value of Data

Some of the more interesting questions that emerge from using advanced analytics and algorithms to drive our understandings of health surround a question that is likely to get a lot more contentious over the next decade: Who owns the right to new ideas, products, services and cures that emerge from the findings we gain from mining the collective?

 

That was the core premise of a forecast perspective I wrote for our HC2020 work looking at the future of health data rights. In it, I argued that in light of efforts to mine health data for meaningful research, we will come to see our data as a sort of personal asset--and expect that, in return for giving up personal health information, we'll be getting something in return, whether it be money right now or the feeling that data won't be misused.

 

Since I wrote that forecast, a whole variety of new practices involving data privacy and control have emerged. At this year's World Economic Forum, as the Wallstreet Journal reports, "executives and academics gathered to discuss how to turn personal data into an "asset class" by giving people the right to manage and sell it on their own behalf." And this discussion isn't just theoretical. Startups like I-Allow and Personal are allowing people to essentially gain a share of the profits that company's currently receive for selling their data.

 

 

 

 

These companies appear to be mostly focused on areas outside of health, but it's a clear signal of an effort to begin to see data as a form of value.

 

In health, the signals seem to be pointing toward more commons-based, rather than profit-based, approaches to the value of data.

 

For example, Alex Carmichael highlighted an emerging practice known as data donorship, in which everyday people donate their data to nonprofit and public health efforts. Instead of donating their money, in other words, people can advance health causes by donating their information to organizations that will use it to advance the public good.

 

 

For starters, the idea of “data donorship” is starting to emerge. The Lance Armstrong Foundation used this term in one of their recent presentations. And a direct example of this idea is TuAnalyze; a new application launched as a partnership between TuDiabetes.org, a social network for people touched by diabetes, and Children's Hospital Boston.

 

The application enables members to submit a key health metric known as Hemoglobin A1C as part of a massive data donation drive. The information submitted by members will be displayed in a map of the United States on the TuDiabetes network, with states lighting up according to the aggregate A1c data. Once a threshold of participants in each state is reached, the state's color reflects whether the average A1c submitted is within the range recommended by physicians.

 

In a press release, Manny Hernandez of TuDiabetes said, "Analysis of the data collected could determine, for example, trends or a correlation between people's participation in health related social networking and level of diabetes management."

 

 

The interest in data donations has risen to the point that, in a commentary on CNN.com, Nathan Wolfe of the Global Viral Initiative asked for data donations to fuel his group's efforts to find rare viruses.

 

What we need now is data philanthropy, a term that emerged spontaneously during a Davos conversation with open-source visionary and World Economic Forum CTO Brian Behlendorf. We are calling on companies to provide data as part of their strategic philanthropy, and to work with recipients like ourselves to establish processes to safeguard and properly anonymize data.

 

 

The story right now, in other words, is that nonprofits, startups and everyday people are experimenting with how to understand their data--health and otherwise--as a meaningful form of value. In the next decade, look for these debates to become more contentious, and the experiments to become more diverse.

 

You can find a more detailed perspective on health data rights by checking out our HC2020 forecasts here.