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
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