Personal Genome Management–the next big thing? by Matthew Holt

There are 160m Americans looking for health information online and somewhere in the realm of 10–30% of those are viewing and creating their own content. But that has made moderate impact on the mainstream press (with Laura Landro being an honorable exception). So it was a little  surprising to see both the WSJ and the NY Times feature a related issue in the last week—online genetic screening.

Suddenly the concept of getting your genome tested and laid out online is really hot. 23andme (with its Google connection and Esther Dyson on the board) and Navigenics (with Kleiner Perkins and MDV as blue chip VCs in a $25m round) are the two best known west coast players. 23andme has already found out that Warren and Jimmy Buffet are not related and you can go to their site and sign up for their service for under $1,000. (And learn lots more about it in this Wired article) But they’re not alone. In Boston, Knome is gearing up for something similar and Icelandic company DeCODE genetics, which already has a database with the island’s entire population in it, has also introduced a similar service called DeCodeMe.

And of course there’s The Personal Genome Project. It’s an effort led by George Church and includes 10 people who are putting all their genetic information online. (One is Esther Dyson of course)

Meanwhile, plenty of other companies are doing genetic testing mostly on genealogy grounds. The Genetic Genealogist Blog estimates that some 600,000 tests have been done and they are worth about $300 each. but for an annual market, that’s only $25m. The Genetic Genealogist Blog also has a long list of those genetic companies.

Finally, while there’s all this excitement about doing comprehensive DNA testing, DNADirect has been offering a direct to consumer service for a couple of years which offers the most common tests. You can see their price list here. One estimate which seems in the ball park is that the total market for that testing is $200m.

But let’s hang on a minute. The genetic test market is very small, and the management services that these companies offer around it are going to only be a share of the testing market itself. So the fact that Navigenics has already raised money at a substantial valuation means that some very astute people are thinking that genetic testing will turn from an occasional activity for a small minority of patients (usually those going into pregnancy with some type of risk factor) into a consumer norm that most patients will have as part of the standard testing they get done. And that management of that genetic information will be part of the new flow of consumer and clinician activity.

This is a big bet indeed. Of course there is no real current consumer DNA health management market. Frankly the consumer disease management and the personal health advocacy markets barely exist yet either. And the genetic testing/personal medicine market of course has even greater potential, but also is much harder to achieve.

So we’ll see. Are 60 million baby boomers ready to integrate genetics into their personal medical records? And are they ready to both pay for it (or get their third party intermediaries to do so)? And is the health care system ready for the consequences. If so, we’re into a revolutionary period. If not, well I think we know the short term outcome.

Matthew Holt

The Digital Health Revolution – Fard Johnmar Interviews OrganizedWisdom

Fard Johnmar and ScribeMedia have an excellent web video series called The Digital Health Revoution.  They are covering Health 2.0 and doing longform interviews to really dig into the details…here’s their most recent interview with Unity Stoakes from Organized Wisdom. All feedback appreciated!

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

Health 2.0 on Location in NYC by Indu Subaiya

Indu

The
Health 2.0 team converged in NYC this week for a day of
meetings with the New York Times, Digitas Health and a host of our favorite
Health 2.0 companies based in the Big Apple.  First it was lunch with
Carly Kuper and VP Patrick Denton of Digitas at the Gramercy Tavern. Among other things, we
discussed the regulatory and legal challenges that hamstring many
pharma companies from becoming full-fledged Health 2.0 players, despite
the many progressive people within their walls. 

Next, we caught up
with Sarah Greene, Product Director Health at the New York Times to talk about some
exciting new online features at the Times. Sarah told us she is ecstatic about the reception so far for “Well”” the new blog by ex-WSJ’er Tara Parker-Pope.  The Times obviously doesn’t share metrics, but she could tell us that  Tara is moving up swiftly in the rankings of their in-house blogs.  We were thrilled  to meet science editor Laura Chang. (Matthew is a huge fan!) And also had a chance to meet with NYT.com Health section editor Michael Mason.

Unity Stoakes from Organized Wisdom helped organize our happy
hour at the Swift Hibernian lounge.  He and partner Steven Krein (Promotions.com, Law.com) are pushing full
steam ahead building out the new face of Organized Wisdom on a
wikimedia platform, hiring for a bunch of new positions and getting all
sorts of attention from the investment community.

Bill Allman from Healthcentral also stopped by. How many sites live under the Healthcentral brand? I think it’s 40 and growing! Bill’s point is that consumers want sites that are condition-specific
in addition to general health reference sites, so they’re off delivering on that need.

Virgin USA was in the house as well. Paul Gollash and Julie Peters represented and told us about Virgin Life Care, that offers a rewards program for getting fit. You can accumulate healthmiles through your employer, the way we accumulate skymiles. We can also expect a new service around health advocacy sometime in early 2008. We suggested their rock star CEO make an appearance at Health 2.0 in the Fall. They couldn’t promise anything, but we personally think he’d enjoy the company, and he could fly in on a Sermo blimp.

Speaking of Sermo, Gina Ashe and company were on hand to talk about recent successes. Sermo is kicking up the dust wherever they go. At a recent conference, they had a bunch of girls on rollerblades with t-shirts emblazoned with “Diagnose This” handing out actual intellectually challenging case studies. The doctors followed the girls into the parking lot; those medical cases must have been really compelling!

Dan Kogan, Fard Johmar, Barry Carroll a veteran contributor to THCB also joined us. Dan Kogan is building Health World Web a site to rate doctors and develop profiles.  Fard is busy with his growing  health media empire and with his TV show, Digital Health Revolution.

We were sad to leave NYC, but we’ll be back. Stay tuned for us to pop up in a city near you!

Indu Subaiya

Health 2.0 Editorial in the LA Times, by Matthew Holt

On Sunday the LA Times had an editorial, no less, about physician rating sites. Now to be honest it didn’t say a whole lot except that there’s no one answer yet to the question, “which web site should I go to find out absolutely everything I need to know about physicians?” It was written about (or at least used as its frame of reference) the Wellpoint and Zagats deal, even though there’s no there there yet that anyone (even a Wellpoint member) can see. Somewhat more surprisingly, it didn’t mention the seventeen stories about Wellpoint’s naughty behavior in California in the last year. Funny that, because the LA Times (in the guise of reporter Lisa Girion) broke those stories. So just perhaps Wellpoint may not be the best place for consumers to go for unbiased information.

For that matter two local LA companies, Xoova and Careseek (FD, I’m on the CareSeek board), might have got a mention rather than handing all the plaudits to out of state worthies like Revolution (and N. Cal renegades like Vimo) let alone the incomparably bad RateMDs.com.

But these are minor nit-pickings with what’s a good general article, suggesting that the medical establishment is against these sites (no, shit!) and that the database integration required to manage them is a big challenge (True, and database management and integration is not something you often read about in editorials!).

The editorial’s main contention suggests that this is inevitable and that this is a good thing. That is correct, even if we’re not as “well into the trend <snip> dubbed ‘Health 2.0’ ” as the LA Times believes we are!

Matthew Holt

Welcome to The Health2.0 Blog

Since the Health 2.0 conference in September, the blogosphere has exploded
with hundreds of blog posts from people all over the country and world. Among
the myriad thought-provoking pieces on Health 2.0 have been contributions by
Esther Dyson at the Huffington Post, David Kibbe,  Brian Klepper and
Jane Sarasohn Kahn defining Health2.0, Amy Tenderich on DiabetesMine, Scott
Shreeve on healthcare FICO scores, and many, many more. There’s been
posts in lots of countries and several languages. Plus the opening video has
been reposted and commented on in several places (usually with great
compliments, but not always!)

Given the bits and pieces of interesting conversation on the Facebook group,
the Health2.0 wiki, THCB and more, we decided to create a forum for our diverse
and emerging community to convene and deepen the conversation. So with great fanfare….

….please welcome The Health 2.0
Blog

This blog is for the whole Health2.0 Community as a space to write and to
comment. Several posts from elsewhere are filling the back content, but this
blog is meant for original content.

We’ll be starting with some contributions from people we know well but invite
contributions from anyone, so long as they are relevant to Health2.0,
interesting to the community, and so long as the author commits to contributing
regularly (even if only every few weeks). The detailed rules of engagement can
be found here.

So if your mind is still buzzing from the conference, or if you’re working on
something you want to share with the rest of the community, or if there is
something particularly controversial that you want to weigh in on, send our blog
meister John Pluenneke an email so he can set you up as a contributor!

We look forward to hearing from you!

Indu Subaiya & Matthew Holt