Building the data commons for health, social media, and more…


A little while ago I was interviewed by Don McPherson for his 12 Geniuses podcast series on The Future of Social Media. It was a great conversation. We covered a lot of territory, starting with the history of social media through to today and beyond. 

One of the ideas I discussed was the potential for a ‘data commons’ to give not just each of us individually the value of our own data, but to create collective value. I observed:

Social media are a commons. We’re all participating. We create common value. There is the potential for value creation for everybody through the breadth of participation. How it’s managed determines how that value is allocated.

If we look to the world of health, where there is billions of times more data than there was before, literally. Imagine the ability to collect data about individuals and to aggregate that, to understand how this can be used to help other people.

Case in point, let’s say you have a full genetic profile and also behavioral data, and every aspect of your ailments for every individual on the planet, the boon to medical science would be unimaginable. We could understand for an individual with a particular genetic profile, with a particular life history, with particular behaviors, correlating with a whole pool of other people, precisely what the best interventions would be.

This would make these individuals as healthy as is possible. Yet this approach is fraught, of course, in the extent of personal data sharing that would be required to make this happen.

This is one of the big challenges moving forward: how do we take this aggregation of immense amounts of individual data, which people rightly feel is very personal, and use it to create common value for society?

There is no simple answer to this. But I think this is an analog to the situation with social media.

There have been many promising data commons initiatives in healthcare, with current interesting examples including the Finnish Apotti and The Polis Center’s Health Data Commons. However many have run afoul of the deep challenges of health data sharing.

It is of course optimistic to imagine that we might be able to build an effective data commons across social media platforms.  Yet for it to be possible at all we need to start imagining what that might look like, and the potential paths to create it.

More generally, given the central role of data in individual, organizational, and societal value creation, we need to be thinking beyond simple data ownership, to creating the platforms that will allow us to create common value, value for everyone, beyond what we can create for any individual person or entity.

Extraordinarily difficult. But the rewards are massive if we succeed even to a small degree.  

Image: Pietro Jeng