Re: [projectvrm] SXSW is slowly moving in our direction

[Adriana Lukas < >]

Mary, I understand. Let me assure you that the London QS group which I
organise is now infected with the values of open data, data ownership,
privacy and individual-driven data analysis. :)

http://www.meetup.com/LondonQS/

Much more to do, with no guarantee it will go where we wish to go, but
the above is the main reason I have started the QS group 2 1/2 years
ago. We are now skirting the edges of 1000 members with attendance
growing steadily.

Adriana



On 13 March 2013 17:13, Mary Hodder 
<
 >
 wrote:
> Brian, and All,
>
> I'm not at all surprised to hear about this..
>
> 2.5 years ago.. I attended a QS and led a (hard won) session for developers
> on how to do what they do with Quantified Self data, but still get
> permission and ask the users, and let them control their own data.
>
> I say hard won because the QS organizers seemed puzzled by this topic of
> people driving their own data, of their need to control this very personal
> information collected and used by QS apps and devices, etc.. and therefore
> it was really tough to even get the session but the organizers did allow it
> on the last day, announced verbally from the stage that morning.
>
> About my session:
> http://napsterization.org/stories/archives/000762.html
>
> I get things have evolved at QS.. but i think that evolving has just been
> the organizers are more open to the idea of the users driving their own
> data.. it's rarely discussed and the developers and makers that attend don't
> have it on their radar, even now.  I occasionally attend QS things and don't
> see much change.
>
> I do find it disheartening..
>
> On a separate but related note, this came out a couple of days ago:
>
> U.S. doctors don't believe patients need full access to health records
>
> http://www.computerworld.com/s/article/9237428/U.S._doctors_don_t_believe_patients_need_full_access_to_health_records
>
>
> This is going to be an upward battle.. getting access to data about
> ourselves from devices, healthcare providers.. etc.
>
> Mary
>
> On Mar 13, 2013, at 2:42 AM, Brian Behlendorf wrote:
>
> On Tue, 12 Mar 2013, Doc Searls wrote:
>
> On Mar 12, 2013, at 5:06 PM, Brian Behlendorf 
> <
 >
>  wrote:
>
>
> I went to a quantified self session, and the idea that the person this data
> is all about should be in charge of where that data is and able to combine
> it from different products/vendors was relevatory.
>
>
> Meaning it was a dawning of realization for people there? If so, wow.
>
>
> Almost.  It was this session:
>
> http://schedule.sxsw.com/2013/events/event_IAP15589
>
> Two of the three speakers were device makers.  One was a moderator who just
> did intros. The fourth, Gary Wolf, my dear friend and Hotwired
> co-conspirator, who is considered a "godfather" in QS as he has written
> extensively about it for Wired and some other channels, started his short
> speech by talking about how difficult it is to integrate the "learnings we
> get from each device ... I have to cut-n-paste from a web page into an excel
> spreadsheet to integrate data from my Nike Fuel Band with data from
> something else."
>
> Upon Gary's prompt, I suggested to the panel that there may be many
> consumers holding back from engaging in QS due to a perception that each
> device is creating separate silos of data being held by companies with whom
> there has never before needed to be a relationship of data trust, and that
> just gives lots of folks the creeps.  At the other extreme are the device
> enthusiasts who have more than 1 or 2 devices and want to build dashboards
> to combine data - "learnings" - in a way more automated than cut-n-paste
> into excel.  So I asked the panel - who is focused on solving that problem?
> What standards are emerging that the device makers are looking at, or that
> the hobbyists are starting to bootstrap?
>
> Maybe this was the wrong panel to ask that of, but the device makers went
> off on a tangent about sharing data with doctors and how complicated that
> all was due to that pesky HIPAA thing, which was both totally not the
> question I asked and also ironically a domain that is standardizing rapidly
> anyways.  Gary simply didn't know of anyone trying to integrate the QS
> space, but felt strongly it should be done - a "someone aughta" rather than
> a "here's how".  The rest of the audience Q&A continued to ask questions
> about data and privacy and terms of use, even if the device makers really
> would have rather kept telling you about the bra that will tell you if you
> have breast cancer, or the whole-house 3-D motion sensors that will learn
> your "behavioral genome".
>
> It was disheartening because I assumed the QS crowd was stuffed with Maker
> and Open Hardware types for whom locally aggregating data and controlling
> devices in a synchronized way would be second nature.  But everyone's got
> the "big data = $$" addiction now, has been pummelled to "keep it simple for
> the end user", and look at hardware as the loss leader.
>
> I went to a Big Data meetup where we formed off into tables, and naturally I
> gravitated to the "data sharing platforms" table, and the conversation went
> from HBase and Hadoop to how to help the Microsoft ad developer and the
> Experian executive at the table work together.  :(
>
>
> Not surprising. When I'm at that kind of thing I feel like I'm in the
> antebellum South, listening to the plantation owners talk about how to get
> more productivity out of their slaves.
>
>
> HA.
>
> Well, enjoy the crowd. There is still plenty of fun in the halls, the
> streets, the clubs and the restaurants.
>
>
> Seeing @amandapalmer play her Ukelele song while standing on a bar at a
> BMorg staff party was hard to top.  Until the next night, which found us
> firing a potato gun off the deck of Richard de Cayeux's house.
>
> One hopeful sign - I had a conversation with Amit Kiran, an MBA and "Design
> Strategist" with Maya (the design tools company):
>
>
> http://www.maya.com/about/amit-kiran
>
>
> He said he'd just worked on a book on the relationship between big data and
> user-centered design; as in, how can we help individuals - more mortals -
> understand how to relate to the universe of their personal data floating out
> there, and design our apps in ways that address that. Or something - I can't
> find a link to the book yet, I'll email him and ask for it.
>
>
> Love to see it.
>
>
> As Drummond guessed, it indeed has to be "Trillions" he was describing, so
> maybe I was reading more into his description than I should have, but I'll
> add it to my queue regardless.  Glad to hear that firm's engaged already in
> pclouds.
>
> Brian
>
>