May 28, 2011

Where is the Personal Data Awareness? And what are the Missed Opportunities at QS2011

I'm at the Quantified Self Conference in Mountain View today and tomorrow.

A few thoughts. There are lots of people here from various disciplines: health care, tech companies like 23andme.com that marry personal genomics and tech, apps makers and health and wellness hardware makers. And lots of folks just wanting to track themselves.

Sessions are preprogrammed (in other words, the conference is all done top down broadcast mode), and now and then in people's statements, a person will pass along the vibe of the old style medical industry (that is: we know more than you and we'll tell you what's true.. that mode was in the opening session where we were lectured to). Though I just walked through all the sessions in round 1 and the individual break out sessions are more discussion mode which is great to see.

There was a near complete lack of consciousness about protecting user's data as I walked in and spent a few minutes in each of the first 6 sessions. The impicit assumption was that "we" (builders, companies, etc) can take data and use it for whatever "we" want. Building systems that aren't just about more silos with data lock-in, or building for a Personal Data Ecosystem model where users keep their own archives and data, and then choose where their data goes, what purpose it's used for and control what is happening isn't on the radar. It is especially important that we look at issues of privacy, control, autonomy, choice and transparency for the highly personal, very sensitive data collected around personal wellness and health.

There is a single session, led by lawyers about privacy in round 2. But the rest of the sessions do not seem to be aware at all that they need to build from concept on for privacy, data control by the users, where users keep their data and the applications, devices and monitoring tools "use" the data with permission.

And there is no session about personal data control, where the QS apps would work on a Personal Data Store. I've asked to have one.. but we'll see if they decide to let me do it. The assumption is developers will just build more silos with more data collected, about you, crossed with other data about you, that after combined, creates yet another silo of data. There may be an API available, but effectively, the data is stuck in another silo, that a regular user can't really get at it, hold it, control it, share it, correct it or delete it.

It's dismal.. thinking about how all this highly personal data is just assumed to be owned by apps makers and companies and users are just cows in a big milking system. The participants of QS are just continuing the tradition started by the health industry and continued by tech company silos in making the users say "Moo." Pick your ecosystem and prepare to be milked.

Lastly, I'm really happy to report that the QS organizers decided to order a really healthy vegetable lunch salad (with either chicken or tofu on it).. Great work on that front!

Posted by Mary Hodder at May 28, 2011 11:07 AM | TrackBack
Comments

Hi Mary,

I hope your overall impressions of the conference weren't as dismal by the end as they were when you wrote this.

I think it's worth validating some of your impressions about the QS community - certainly there is a significant representation of 'traditional' healthcare, and a fair number of entrepreneurs seeking to apply now standard models of monetization - i.e. milking the data, to the more intimate world of QS.

I don't think it's surprising to find this mix in a world where influential and successful businesses that are regarded as models (e.g. Google, Twitter, Facebook, Foursquare, YouTube, etc.), are all based on exactly the milking model, and where much of the drive to self-track comes from the desire to improve health. Even many of the non-corporately affiliated participants such as myself mostly self-experiment to solve health problems.

The QS organizers generally try to provide a forum where any and all interested parties can meet and cross pollinate, rather than trying to control the composition based on their own ideals - i.e. it seeks to truly be a community and not an issue driven organization. If there is a ground rule, it's that the community is about sharing learning rather than pitching businesses. This means that businesses that have genuine learning to share or to seek are more than welcome.

So, when you lament the lack of awareness of personal data issues, I find myself asking the question, is there something standing in the way of thoughtful passionate people just showing up in the QS community and helping people to understand? Why aren't the personal Data Ecosystem builders sharing their learning with the QS community? A community which is seeding startups that inherently collect personal data seems like a place for personal data people to have a meaningful impact at the early stages of projects.

Obviously part of the answer is that your presence is the beginning of the solution.

On that point I'd say that for me, the privacy and data ownership issues - as brought up by you (and others) in the privacy breakout, and mentioned by Kevin in the closing talk, were by far the most useful part of the conference. I've already had several hours of offline conversation with people I only know through QS about this topic. (and is why I'm googling you) So for me the QS conference was *all about* personal data and privacy.

One comment I heard more than once was that investors saw data silos as a key asset and would never allow businesses to write privacy policy (or invest in code) that limited their freedom to monetize.

Since my projects don't have outside investment, and I care about these issues, I feel free to experiment, but perhaps my thinking is the exception rather than the rule.

Here's a question for you: If I want to enable my users to keep their location history in a Personal Data Store. Which one should I use?

I'm serious about implementing this feature, and I've avoided working on it until now (or collecting the data at all) because I don't have a good answer. My resources are very limited, but when I find a pragmatic solution, I'll happily give talks on my experiences in whatever fora the QS community affords me.

Anyway - thanks for being at the conference. You were a catalyst for much of the thinking that I did over the weekend.

Posted by: Robin Barooah at May 30, 2011 06:14 PM

HI Robin,

I want to point you to my second blog post about a session i led at the end of the QS2001 event:

http://napsterization.org/stories/archives/000762.html

It was a complete reversal, for the 15 or so folks who came, in thinking about how we could build for a user-centric system and whether we build silos or for a PDS system.

I left the QS event really psyched by the discussion we participated in about Personal Data.

Thanks,
mary

Posted by: mary hodder at May 31, 2011 11:27 AM