My notes for the panel today at Health Datapalooza. I’ll come back later and add links, fix typos, and so forth…

Why consumer access to data is important
- because data is a digital representation of us. and it’s increasingly being used to affect our real-world services, their costs, their benefits.
- we’re increasingly able to generate data that used to be the exclusive space of the clinical system. genomes are just part of it. health data is in everything. Facebook cups, keyboards, iPhones, google’s next phone.
- but it’s faulty at worst, and incomplete at best. if we can’t access it, we can’t tell how and where it’s incomplete or wrong.
Use cases and potential applications for consumer access to data
- send to app provider to interpret data and help me make better choices about my care.
- send to app provider to interpret data and help me make better lifestyle choices (ideally not a panopticon of health provider, ATT, and government - but a decentralized, competitive market)
that’s what this event is mainly concerned with. but there’s more.
- extract the “real” clinical data (compared to the “dry” data from phones etc) from the record. needs a lot of normalization etc but it starts to paint a longitudinal phenotype of me and my life. mapped to my genome, in large in sample sizes, we can start to correlate lifestyle and medical treatment outcomes to individual genomic variation.
Current state of consumer access to data
- raw in every sense of the word. most folks aren’t exactly aware of the things we here are aware of.
- most of the data collection is happening in zones like mobile and social where we have no positive rights to privacy, like health, and where the entire system depends on designing awareness of the data (and its ownership) out of the hands of us as citizens.
- in health, access to data is hamstrung by a combination of rapidly advancing technology and slowly (that’s a nice way of putting it) adapting law.
- we just moved here from Oakland. when i wanted my son’s immunization records to get him into his new child care center here in DC, the provider couldn’t fax them to me because they were afraid it violated hipaa. but it would have been legal to hire a TaskRabbit - total stranger - to go pick them up, take them to Kinkos, and fax them to me.
- that’s insane. we’re not being protected. we’re not getting access at the rate or in the form that we need yet. it’s getting better, but it’s still slow. and we’re less willing to tolerate it, because we’ve been trained to expect more from our institutions by good technology.
Where we have to go next / role of Blue Button+
- the hard part is that most of us, when handed a file of data, don’t know what to do with it. i downloaded my genotype, my fitbit data. No idea what to do with it. compared to my “medical record” in PDF, which is computationally useless but human readable.
- the investment in BB will pay off best when I have the right to direct my file to someone who can do something with it, for whatever reasons i choose. whether to run an app that makes sense of the data or to donate the data to research.
- BB+ is a great example of this. It allows for both market solutions (banks!) to emerge and for pre-competitive or public private solutions to emerge where we can donate data, or share it conditionally.
- i’m looking forward to pushing Sage Bionetworks, the non profit where I work, to be one of the first certified recipients of BB+ precisely to enable the non-market reuse of health records data.