Health 2.0 and Identity: Who else cares who I am, as long as I do? By David Kibbe MD MBA

DkMy
recent blog on Health2.0 data exchange using the CCR standard and a
sparse information model
brought this comment from a reader who identifies themselves as jd:

“I’d
really like to hear your insights on the issue of uniquely identifying
patients. Whether we have a sparse information model or a more
complete/complex one, none of this is going to work unless there is an
automated way for data from multiple systems to converge into one
record. There is now an NPI for physicians, but what about patients? It
seems something like a social security number is out of the question,
so what are we going to do in it’s absence?

Of
all the large problems we have ahead in developing computable data
exchanges (privacy, data ownership, business models for data exchange,
operational data standards, etc.), it seems that this issue ranks right
up there. Any thoughts on how we can resolve it?

Super
questions.  Right on.   While I agree that having a way to identify a
person as unique will be important to some Health2.0 processes and
functions, I think that in general the “identity problem” is given more
worry and concern than it deserves, and is horribly misunderstood.   I
agree with jd that the government shouldn’t try to put in place a
mandatory National Patient Identifier.  Bad idea, won’t ever happen,
isn’t required.  So, what to do?

There is a big problem with identification systems in general. I don’t think
one can escape the fact that unique identifiers are indelibly linked,
both in reality and in the mind of the body politic, with control
and power over the individual.  We use identification systems to
control immigration, taxes, and vehicular licenses. Banks use our
Social Security numbers and additional identifiers to help them keep
our money controlled, and safe from bad guys.  In large health care
enterprises, we use “master patient indexes” to assign unique
identifiers (ones the person never knows about) to control data and
documents.  And CMS has issued providers National Provider Identifiers
in large part to control Medicare spending, especially to help them
prevent fraud.

All
of these functions and processes are legitimate and have value.  I’m
not going to argue against them.  But I will point out that much of
what happens transactionally on the Internet and the Web happens at
almost the complete opposite end of the spectrum from the examples
above, with absolutely no need for identity.   And it all works just
fine!

The
person who posted the comment above signed his commentary with the
initials “jd” — and no more.  No way to identify him or her, right?
Could even be an alias.  But that lack of identity didn’t prevent him
or her from contributing a comment and eliciting a response.  Millions
of us have email accounts with fake names and aliases, and that doesn’t
prevent us from communicating and sharing ideas and messages.
Similarly, blogs, FaceBook, and game sites all exist and thrive
without an “identity problem. It would be very interesting to
quantify how much of the traffic on the Internet occurs anonymously,
and how much with strong identifiers attached. Life is messy, and we
like it that way much of the time.

So
here’s my point:  before we assume that the lack of a “national
identifier” of some sort is a prerequisite for a thriving Health2.0
economy, let’s consider use-cases when and where unique identity really
matters with respect to the collection, organization, analysis, and
exchange of personal health information. And where it doesn’t.

I
think we could think up plenty of both. For example, if I’ve
collected my own summary health information, from whatever sources, and
have created a CCR xml file that contains my diagnoses and medications,
allergies and immunizations, then I may wish to send that information
to websites for various services, and to do so de-identified or
completely anonymously. To make this example a little starker,
suppose I’m using a web service that will provide me with my risk of
depression, given my summary health information.   I would almost
certainly ONLY invoke that web service if I could do so anonymously, in
such a way that the service couldn’t link my information back to the
“real me.&quote. As long as I care who I am, no one else needs to know.

However,
imagine that I subscribe to a service that regularly updates my health
information from three doctors’ offices, a hospital system, and a
clinical laboratory, and places that information in Microsoft’s
HealthVault or some other repository of my choosing. In that case,
those organizations (actually, their servers) need to know my
“identity” as a unique entity, almost certainly a number or hash of
numbers, that cannot be confused with anyone else’s.   In that case, I,
the consumer or patient, need an identifier in order to benefit from
Health2.0.   (We could spend an eternity arguing about whether this is
actually an assigned number, or an algorithm that uses data to assign
one.  To keep the conversation reasonably short, let’s all agree that,
in the end, this is a number assigned to me, and only to me. )

The
question that arises at this point is this:  who will supply me with
that identifier in those cases in which I need one?  And, who will pay
for that identification system?   Do we trust the federal government to
assign us National Identifier Numbers?   Would a consortium of
employers be the best bet?  How about Wal-Mart?  They’re really good at
this stuff; best inventory tracking system in the universe!  (Hey, if
the Eagles trust Wal-Mart to exclusively distribute their new album,
“Long Road Out of Eden,” then they’re not all bad.  I’m a big fan of
Don Henley.)

Since
you asked my opinion with your semi-autonomous comment –  I’ll be
glad to give it to you. I would like to see a National Voluntary
Health Identifier system be available to me, the consumer, for use when
I need a unique identifier. I’d like a non-governmental and
non-profit entity that is trustworthy to allow me to create and manage
my own unique identifier, free of charge or for a very small sum.
That way, I might engage in Health 2.0 transactions that require data to
be linked using an identifier, but still maintain my anonymity
computationally.  And I could decide which services know my real
identify, and which do not.  Sure, I may not be able to participate in
some of them.  But, hey, no one forces me to use a credit card, now do
they?

Fortunately,
thanks to Barry Hieb and a few other dedicated people, the technology
and methodology to put in place a National Voluntary Health Identifier
suitable for Health2.0 use-cases already exists, and has been worked on
for several years.  Like many aspects of Health2.0, it is on the shelf
and ready to go once the business model matures and the industry
identifies, so to speak, the need for the technology.  This is one of
those pieces to the puzzle that Marty Tannenbaum has written about as
an “accelerator” for Health2.0. To learn more about how such a system
of consumer-controlled identity services would work, I invite you to
read a white paper by Barry, who works for Gartner, downloadable as pdf.
So…those are my insights.  Hope they stimulate more responses from you, jd, whoever you are.

David Kibbe

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