Medical Research and PatientsLikeMe

Every startup has a frequently told founder’s story. Ebay’s (apocryphal) story is about the founder helping his girlfriend with her Pez Dispenser collection. PatientsLikeMe’s story is about the founders watching their brother die. Ben and Jamie Heywood’s brother Stephen had ALS, the debilitating disease forever associated with Lou Gehrig. As they worked to improve his condition, they realized that data sharing among the community of sufferers could be a powerful medical tool. They founded PatientsLikeMe as a site where people come together online not just for the moral support of sharing their stories, but for the concrete medical value of aggregating data that official medical channels don’t have the resources or inclination to gather.

It’s a great concept, managed very well. I’ve always thought of the web as a tool for finding “people like me,” people who’ve encountered and solved my problems before me. Think about your own experience. When you’re looking to resolve some technical problem, what kind of site is most likely to be the one that helps? How often is it the official support site for a big company? I’ve found it’s almost always a fellow sufferer who makes the biggest difference. It’s the same way with medical conditions. Who is the most likely person to give you straight and credible answers about living with your disease? Somebody else with the same disease. Your doctor wants to help, and that is of course where your medical advice starts, but ultimately he’s not facing the same situation you are.

If you want to learn more about the site, I highly recommend Jon Udell’s conversation with Jamie Heywood or the TEDMED talk embedded below.

Can this really make the kind of difference that a proper medical study can? Nature Biotechnology just published a paper from PatientsLikeMe that mined their community of ALS patients to refute a dubious claim that lithium was slowing the disease. It’s an important result, and will certainly be the first of many insights that can be made more quickly and more cheaply by working directly with data volunteered by the patients themselves.

Standing in the right place

Much is made these days about beautiful data visualization and how subtle but sophisticated presentation can bring important details to the fore. But I think the best visualization always comes down to having the best seats. If you’re in the right place when the poop goes down, you’ve got all the visualization you need.

For instance, here is some wind speed data from a buoy floating in the Gulf of Mexico. In fact, this is NOAA’s National Data Buoy Center Station 42001. The subtitle to this picture is: See if you can guess when the hurricane went by.

What correlation do you notice between wind speed and atmospheric pressure? If I told you that Hurricane Rita came visiting during the reporting period, could you make a guess as to when? Can you suggest a scenario that might account for the following notes from this station’s website?

Station 42001 went adrift on 09/23/2005 and the last report from its moored position (listed above) was at 0230 GMT.

The best data visualization is often determined by collecting the right data at the right time. Which brings me to a little visualization I saw on Ben Hyde’s site. The question: does the meal schedule affect a judge’s decisions?

Once again, the important thing was to find the right vantage point. Once you decide to correlate food breaks with favorable parole decisions, the visualization speaks for itself. It’s one little jagged line, but it’s very eloquent. When do you want to appear in court?

Mmmm. Donuts.

Music videos and video songs

Culture advances by composting the layer just below it. That which seemed rare and rich yesterday becomes the steaming rot for tomorrow’s sprouts. Kutiman is an Israeli musician who had the brilliant idea of using various “found” YouTube videos as the raw material for his own compositions. He’s sequencing and channeling dozens of people. I wrote about him once before. I still go back and listen to the Mother of All Funk Chords every now and then… it’s one of my favorite things on the web. More recently I came across this new Kutiman release, My Favorite Color.

It’s wonderful to think of these people collaborating in absentia through Kutiman’s deft touch. There’s something transparent and guileless about the resulting music. It made me think of Pomplamoose, a duo that Greg turned me on to. Their specialty is something they call a “video song,” a sort of intentional version of Kutiman’s mixes. In a video song, you see the anatomy of the song laid bare. As band member Jack Conte puts it (this is from the Wikipedia article)

  1. What you see is what you hear. (No lip-syncing for instruments or voice)
  2. If you hear it, at some point you see it. (No hidden sounds)

Slick MTV-style music videos are, of course, altogether different. They superimpose a highly-produced video stream on a highly-produced audio stream, although these two bear almost no relation to each other. Where music videos obfuscate with sound and fury, video songs reveal the essential whatness of the music. It’s another example of technology reclaiming the human aspect that was lost in an earlier, poorer use of technology. As Aristotle might remind us, don’t put the spectacle before the action. Pomplamoose is all about the action. When you think to yourself “By god, it sounds like he’s playing a toy piano,” you soon will see that by god he is.

Here, toy piano and all, is Pomplamoose covering Michael Jackson’s Beat It.

Tuition backlash and disruptive change in education

This is what a bubble looks like.

They’re generally not that hard to spot. I remember various prescient hand-wringing articles about the tech stock bubble and the housing price bubble. The problem is people don’t see the bubble all at the same time right up until the moment that it suddenly pops. At that moment we can genuinely claim to be surprised and not surprised at the same time.

Here’s another graph. This one is about college costs. You look at it and you say, “Man, that just can’t continue.” College costs are growing out of all proportion to income growth and cost-of-living increases.

It well and truly cannot continue growing at this pace, because like all exponential growth, it would eventually blot out the sun. Of course, going to college is a great thing. But sooner or later you just can’t pay for it. The rumblings of discontent are starting to show up in popular media. Here’s the anonymous Professor X writing for the Atlantic: An Anti-College Backlash?

Colleges are stuck in a textbook innovator’s dilemma in the sense that they are still making good money catering to a high-paying market. But because they won’t, or are structurally incapable of cutting prices, disruptive forces will eventually gut them from below. And those disruptive forces are almost certain to take the form of online education of one kind or another. That’s the theme of this piece from the Chronicle of Higher Education: Disrupting College. It in turn points to an analysis written by Mr. Innovator’s Dilemma himself, Clayton Christensen. And finally, here’s a short piece written about Scott McNealy’s investment in open source education. McNealy can always be counted on for a good sound bite: “Universities will be forced to decide what they are. You know, are they going to be football teams with libraries attached? That’s what a lot of them are now.”

It’s hard to say when, but change is on the way. All I know for certain is I would be nervous to be on a university’s payroll at this moment.