Future of Health IT: Trends and Scenarios

"Better Than Free": Lessons for Open Source healthcare software systems

In The Technium, Kevin Kelly's "Better Than Free" post should be a wake-up call for Open Source project leaders, in particular those in the healthcare arena. I first got wind of his post via The Edge, and when it popped up again in Seth Godin's blog, I had to stop and take a look.

This super-distribution system [the Internet] has become the foundation of our economy and wealth. The instant reduplication of data, ideas, and media underpins all the major economic sectors in our economy, particularly those involved with exports -- that is, those industries where the US has a competitive advantage. Our wealth sits upon a very large device that copies promiscuously and constantly.

Yet the previous round of wealth in this economy was built on selling precious copies, so the free flow of free copies tends to undermine the established order. If reproductions of our best efforts are free, how can we keep going? To put it simply, how does one make money selling free copies?

I have an answer. The simplest way I can put it is thus:

When copies are super abundant, they become worthless.
When copies are super abundant, stuff which can't be copied becomes scarce and valuable.

When copies are free, you need to sell things which can not be copied.

Well, what can't be copied?

A great question. Fortunately, Kelly has an answer ready, though I think he left out one important point.

Broken Is Fixed: Health informatics standards in light of Clay Shirky's "In Praise of Evolvable Systems"

I recently re-read an old essay by Clay Shirky (shirky.com) called In Praise of Evolvable Systems. It opens with a laughable description of designing a novelty protocol to slip past the IETF as a joke - however, the feature set described is an accurate description of the World Wide Web, as it existed when Shirky wrote the essay in the late 1990's. That lead-in ends with this:

HTTP and HTML are the Whoopee Cushion and Joy Buzzer of Internet protocols, only comprehensible as elaborate practical jokes. For anyone who has tried to accomplish anything serious on the Web, it's pretty obvious that of the various implementations of a worldwide hypertext protocol, we have the worst one possible.

Except, of course, for all the others...

It seems the WWW protocol family has turned out to be another example of "less is more", or more accurately, "broken is fixed".

Paul Dourish on Anti-Social Computing

Someone at the School of Information recently pointed out a brief position paper by one of the attendees at Microsoft's Social Computing Symposium 2005, Paul Dourish, a "fool" professor at UC Irvine's Donald Bren School of Informatics and Computer Science. It's on the topic of "Anti-Social Software". Plagiarist that I am, I will end up having quoted it more or less in full here, but you can read it in its original context at the Microsoft Research site.

Here's what Dourish has to say:

The Landscape of Parallel Computing Research: NY Times and UC Berkeley EECS

The New York Times had an article today about multicore chips, entitled "Faster Chips Are Leaving Programmers in Their Dust ":

In the future, Mr. Mundie said, parallel software will take on tasks that make the computer increasingly act as an intelligent personal assistant.

"My machine overnight could process my in-box, analyze which ones were probably the most important, but it could go a step further," he said. "It could interpret some of them, it could look at whether I’ve ever corresponded with these people, it could determine the semantic context, it could draft three possible replies. And when I came in in the morning, it would say, hey, I looked at these messages, these are the ones you probably care about, you probably want to do this for these guys, and just click yes and I’ll finish the appointment."

There are those who argue that there will be no easy advances in the field — including some inside Microsoft.

"I’m skeptical until I see something that gives me some hope," said Gordon Bell, one of the nation’s pioneering computer designers, who is now a fellow at Microsoft Research. Mr. Bell said that during the 1980s, he tried to persuade the computer industry to take on the problem of parallel computing while he was a program director at the National Science Foundation, but found little interest.

"They told me, 'You can’t tell us what to do,'" he said. "Now the machines are here and we haven’t got it right."

This controversy brought to mind a lengthy white paper from UC Berkeley that I have been pondering for some months now. The white paper is called The Landscape of Parallel Computing Research: A View from Berkeley. Although the paper is not new, the insights it provides are more than relevant to those of us not on the very bleeding edge of computer engineering, where solid-state physics and computer science meet materials science and computational linguistics.

From the Berkeley paper:

More on the $1000 genome: Gary Wolf on The Quantified Self

I found a more skeptical take on the 23andme story I reported on in my last post.  It's in the Kevin Kelly blog, and the post (not by Kevin himself, but that's OK, Gary's cool) is called The Quantified Self.

Still, within all of these stories I caught the first hint of a backlash. This backlash has little to do with the main objection all of these writers presented, which was: do I really want to have this important knowledge about my genes? I don't think this objection is serious. I don't even get a sense the writers seriously entertain it. I suspect it is a rhetorical effect, an exaggerated worry that lends interest to the promise at hand. (Gray goo serves this function for nanotech.) Perhaps it is the nerd in me, but I have difficulty imagining that accurate medical self-knowledge would be rejected by consumers because they are afraid to know.

Anyway, there's a bigger problem. The companies offering these tests carefully insist that they are not be taken diagnostically, and acknowledge that that are not currently accurate indicators of clinical risks. They give these caveats, while of course also trying to satisfy our desire to get accurate clues to our genetic predispositions to scary diseases.

There's more detail and references than I can describe in this necessarily brief post, but here's a taste:

Healthcare Scenario Planning: Irving Wladawsky-Berger on Multidisciplinary Innovation

Catching up on reading my favorite blogs, I came across a couple of posts by retired IBM R&D honcho Irving Wladawsky-Berger (hereinafter W-B). The first entry I'll write about is called Some Thoughts on Multidisciplinary Innovation.  This is of interest because multidisciplinary innovation is the keystone factor in the translation of recent discoveries in genomics, proteomics, and metabolomics into public health benefits.

W-B says:

Healthcare Scenario Planning: The importance of cyberinfrastructure

In my last two posts on healthcare scenario planning (on 31 October and November 1), I described the potential of a breakthrough translational discovery to act as a critical uncertainty affecting a key driving force on the world of clinical research informatics, the level of NIH funding for translational research. As I pointed out in the October 31 post, such a discovery could have a "Sputnik effect",  turning up pressure on, biomedical research, with a concomitant increase in funding for the NIH's translational research activities.

Today we shift the spotlight to another important driving force, the degree of intra- and inter-institutional interdisciplinary collaboration in the biomedical research community.  A key enabling factor to such collaboration is computing power. Dr. Ken Buetow of the NCI made the case for it in his 2005 Science article entitled  Cyberinfrastructure: Empowering a "Third Way" in Biomedical Research.

Buetow writes:

Healthcare Scenario Planning: The Virtual Physiological Human, circa 2017

Marco Viceconti left a comment on my recent post about systems biology and the work of Denis Noble. Marco gave me some pointers to information about other projects in this arena. Marco knows his way around this topic: he's the Scientific Coordinator for the STEP consortium (STrategy for the EuroPhysiome).  During a tour of some very interesting sites, I found the Virtual Physiological Human project (VPH).

The VPH is "a methodological and technological framework that once established will enable the investigation of the human body as a single complex system." What does this mean?

The human body is like a jigsaw puzzle made of a trillion pieces. Currently we try to understand the whole picture by looking at a single piece, or at a few closely interconnected pieces. The Virtual Physiological Human is the frame within which we can finally start to place the pieces all together, and the glue that connect them. The Virtual Physiological Human is not the whole picture, but in the only way might hope one day to see it.

Projected time frame to completion: Ten years from now. That's outside the scope of my scenario exercise, but it's possible a breakthrough translational discovery, as I described in my post on the forces driving NIH funding, might still come out of this project in the interim, as various subsystems fall into place and interconnect.

Conveniently coincidental for my purposes, the STEP folks have written up a scenario exemplifying the possibilities.

Healthcare scenario planning: Forces driving NIH funding for translational research

Today we'll look at an updated version of the diagram I first showed off in my second-last post on healthcare scenario planning. After a brief explanation of the diagram notation, we'll look at the question of NIH funding for clinical research informatics. Funding to support development of clinical research informatics infrastructure has been prioritized more highly during the tenure of current NIH Director Dr. Elias Zerhouni than during the reign of any preceding Director. Will the funding level increase, decrease, or stay about the same between now and the year 2015? What driving forces affect the outcome?

Healthcare scenario planning: Looking for critical uncertainties

Today we'll go back through the driving forces we've identified - local and global - and see what more needs to be done. We need to examine the local forces we've identified and see if there are underlying driving forces behind these at a more global level. For the past couple weeks I've been working on a diagram that shows the driving forces we've been discussing. I'm finally ready to show it off (opens in a new tab or window):

I'm throwing this out so you have time to think about it before we continue. We'll use this as the springboard for a discussion of the driving forces in our search for critical uncertainties. The discussion may uncover additional factors, in which case the diagram will need to evolve.