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

[Doc Searls < >]

This is great stuff. Thanks!

Doc

On May 20, 2013, at 5:29 AM, T.Rob 
<
 >
 wrote:

> 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=
>