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

[Mary Hodder < >]

Adriana,

I applaud what you're doing. .I think your London group is far more up on 
this issue,
than the folks here in the US.

I still go to the occasional QS thing and I'm surprised by how it's not 
really on the radar..

We need you here!

mary


On Mar 13, 2013, at 3:45 PM, Adriana Lukas wrote:

> 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
>> 
>>