RE: [projectvrm] What can people do with data that companies can't?

[Katherine Warman Kern < >]

Here here.

This post
http://www.comradity.com/comradity/2013/05/integrating-communication-in-a-di
sintegrated-media-landscape.html refers specifically to a professional
disadvantage of disintegration.  

But the principle applies to individuals on a personal level. Time is
precious. Managing multiple communication channels in real time takes a lot
of time. 

Maybe even more esoteric, but even more valuable is being understood.
Disintegrated conversations in both time and space lead to misunderstandings
which may cost personal or business relationships.

The demand for personal solutions to integrate one's presence on the web -
the source of all that BIG DATA - may be strongest right now among
independent sole proprietors whose financial survival relies on being found
and understood.  

I am interested in any apps, platforms to offer our members which help them.
They will be valuable "pilot testers" and they will pay for services that
add value.

K---

-----Original Message-----
From: T.Rob 
[mailto:
 ]
 
Sent: Monday, May 20, 2013 12:30 AM
To: 'Doc Searls'; 'ProjectVRM list'
Subject: RE: [projectvrm] What can people do with data that companies can't?

My answer to this question is integration.  

As you mentioned, Digifit is a silo and their integrations are limited to a
privileged list.  But I want a much bigger integration with regard to
quantified self.  I want to integrate to categories not ordinarily connected
to health.  For example, your list has quantified self data and media usage
in different categories.  I think we'd find a very close correlation between
health and hours of media consumption.  Even more interesting would be to
analyze not just the time spent consuming media, but to analyze specific
shows in relation to health.  Would we be surprised to find a correlation
between some specific content and positive health benefits?  Are people
actually inspired to action by watching Biggest Loser, Intervention, or Food
Revolution, for example?  Would we discover a negative health correlation
with certain talk radio shows?

But I don't see giving my insurer or health care provider all my audio/video
consumption history.

Another thing I haven't seen mentioned anywhere is that few of these
providers can do much, if anything, with children's data.  The opportunity
to capture kid's health data and let parents crunch it is priceless.  As a
kid I went through a lengthy epilepsy diagnosis and it was obvious to me,
even at 7 and 8 years old, that medicine was geared toward adults.  My first
"half dose" of phenobarbital knocked me out.  It was only "half a dose" in
an adult context.  EEG electrodes were so big they overlapped on my small
head making readings difficult.  Eventually I just told them to use the
scrub-and-paste method and later on just use the needle trodes because they
hurt less than abrading the skin for the pasted trodes.

Although the issues I faces are mostly solved, we still have a situation
where kids are not represented well in the data and for reasons of privacy
we'll always face some hurdle there.  So if our kids can't be members of
many of these health sites, perhaps we can load their data into the family
personal cloud and crunch it there.  At some point when they come of age,
they can choose whether to release that history (because all the devices
will soon sign their data, right?) to their insurer, health care provider,
research project, etc.  Perhaps we can find a way to anonymously donate that
data in near-real time so the research doesn't have to wait.

Which brings up yet another point.  We can bequeath our data like any other
personal asset, right?  If we are afraid of what insurers might do with our
data while we are alive, maybe we can donate it to science after our death.
That may cause a situation where cadavers are stacking up on the loading
dock untended whilst disk drives are lovingly hot-swapped into the
university Storage Area Network but we'll have to deal with that if and
when.  Or perhaps some future NAS device will double as an urn so you can
bury your loved one and their data together, should they choose not to
donate either.  I imagine driver's licenses of the future will have an
additional check box:   Organ donor?  Data donor?  Maybe uploading the
deceased's data to Paste Bin is the digital equivalent of scattering their
ashes to the wind.

I'm being a bit dramatic here but the point is that any research hospital,
insurer or philanthropist who takes the long view may consider building
personal cloud apps that collect data they hope will be interesting within
an 18-year time frame (for kids who might release it at 18) or within a 10 ~
20 year time frame (for seniors who agree to release it on their passing).
After the initial priming period, the pipeline would have a continuous
supply of new data coming online.  It would be possible to collect broadly
and let the teens decide which categories to release based on the state of
current research.  

Something else I'd like to see done with this data that companies would have
a hard time doing is socialize it.  For example, today I changed out a fan
toggle switch for a timer.  Affixed to the package was an NFC tag which
could be sensed by my waste bin or recycle bin.  I'd like to correlate
retail purchases to the waste/recycle stream but I really don't want to give
my sanitation company all my purchase data.  Nor do I want to give the
disposal data to the retailers.   For one thing, to which retailer do you
give the data?  You really need a complete purchase history across all of
them for this to be useful.  So I don't see any one vendor getting all this
data but I could envision an app that cryptographically bound the purchase
data to the disposal data and forwarded a result, something verifiable
without revealing the source data, to a social site that allowed you to earn
badges based on reducing your footprint.  The badges could be earned by
individuals or allow people to form teams much like World Community Grid
does.  It would also publish data by neighborhood, city, state, region,
country, etc. so that you could see your rankings.  Can you imagine scout
troops competing to become "Mayor" of the local recycling facility?

There's a lot more to explore here.  I have a whole category of stuff I call
"Stupid Internet of Things Tricks" that I hope to get to soon.

-- T.Rob

> -----Original Message-----
> From: Doc Searls 
> [mailto:
 ]
> Sent: Sunday, May 19, 2013 9:54 AM
> To: ProjectVRM list
> Subject: [projectvrm] What can people do with data that companies can't?
> 
> That's what I ask, and partially answer, here:
> 
> <http://hvrd.me/14jYxGn>
> 
> Prompting this was a question from a major publication. Improve my 
> answers there, or provide your own elsewhere (including here), and our 
> case will
be that
> much better.
> 
> Thanks,
> 
> Doc=