Jon:
Welcome to episode 91 of the Digital Life, a show about our adventures in the world of design and technology. I’m your host Jon Follett and with me is founder and co-host Dirk Knemeyer.


Dirk:
Hello, hello.


Jon:
So today, Dirk, I thought it would make sense for us to discuss some of the latest advances in healthcare and digital technology just because we care deeply about both of those areas. I thought maybe we would start our exploration of the news in this item from the University of Columbia. Engineers there have determined that they can put together a smart phone HIV test which in ten or fifteen minutes enables you to tell whether or not you have HIV and also can tell you if you’ve got syphilis or not. It’s extremely interesting to me, because it’s a combination of the smart phone technology along with just a simple pin prick of your finger to get a blood sample, basically put this diagnostic tool in the hands of everyday people and maybe even more importantly in the hands of doctors in less developed nations who can run test on the spot and sort of determine whether or not any of these disease are present in the patient they’re seeing. To me, having these diagnostic tools coupled with the smart phone says that we’re entering a new era of healthcare in a way that maybe I wasn’t quite attuned to before. How do you take all this in?


Dirk:
Yeah, I mean it’s steps on the path. We’re seeing this technology continue to progress and evolve where our devices can take data from ourselves and interpret and interpret it in ways that use to be done in expensive labs and take a long time. It truly is just sort of one step closer to the Star Trek Tricorder like that’s the endgame in a certain way. The technology of course will be different. There wasn’t technology in Star Trek. The manifestation will be different, but I mean we’re heading towards if you’re going to hook up with someone, you just have something that is not much more intrusive than a breath analyzer that gives you a very quick readout saying, “Yay, this person’s clean,” or, “boo, this person has XYZ.” I mean this is one step on that path, and it’s something that’s coming pretty soon.


Jon:
Yeah, you touched on a couple of things there. One was the sort of the speed so immediate diagnostic tools which can be very important. Second, the price tag, right? Really the mobility of the solutions so now you don’t have to go through your insurance and go through waiting for the lab to get back to you and going to the doctors office, et cetera. Rather it’s all sort of right here right now, and provides you with that capability.

At the same time, I know that on the other side of this, there’s going to be question about how does this data get interpreted right? It might be very nice if you have a nurse or a doctor there with you for this immediate diagnosis, but what if you’ve had a few too many to drink before you do this diagnostic exam on yourself? How do you process this kind of information? It’s going to be an interesting question. I don’t know whether you can stop people from doing that, probably not, but it will be interesting how we can deal with that kind of interpretation in real time.

Dirk:
Absolutely, and it’s one of those things that there’s a lot of uncharted territory there and we’ll have to see how it all comes together in the real world.


Jon:
Yeah, to talk a little bit more about the powerful and sometimes overwhelming aspects of this kind of diagnosis, our friends at 23andMe are now back online kind of. Not online in so far as you know on the web, but rather enabled to give interpretation for particular types of genetic disorders which they had been banned from by the FDA, had banned from doing that because they weren’t following all the FDA marketing procedures and secondarily the FDA was worried that people were going to get ahold of these genetics, this genetic information and wouldn’t know what to do with it.

Well, as of the 19th of February, FDA has allowed 23andMe to give the results for one particular genetic syndrome which is called Bloom’s syndrome which is related to a high probability of cancer, but this is sort of the just one in a series of a lot of kinds of diagnostic tools that 23andMe could offer. The fact that the FDA has allowed them to proceed along this one front is seen my some as opening up the door again for 23andMe to have this wider distribution.

I know you have some experience with 23andMe, Dirk. What’s your take on this flood of information around your genetic material and secondarily, what are your thoughts on people’s ability to interpret it our not interpret it for themselves?

Dirk:
Yes, so there’s a lot of tricky things embedded in there. I mean from a strict consumer use perspective. I mean it’s generally interesting. I think we might have talked on a previous show about different people could take the information differently. We haven’t solved an understanding of the human condition and human personality to the degree which we can yet identify, hey, this person can see this data and deal with it well. The person it’s going to have unintended consequences on them. We’re not able to apply those kinds of filters to the data and there are cases where access to the data, whether it be something that is FDA approved, as is the case with Bloom, or if it’s just some of the sort of Chinese menu of options that 23andMe has for let’s call it less rigorous or at least less officially approved data. Different people are going to take those in different ways.

I don’t know. Then we get into issues of privacy and with 23andMe or similar service that is taking your genetic code and interpreted it, getting that or getting portions of that data in the wrong hands could be really detrimental to people. I don’t know. The genetic stuff, it’s all really complicated and doubly so as other technologies are moving forward. You know cloning and I don’t know, it’s tricky. It’s tough stuff.

Jon:
Yeah, I think there really is a burgeon need for call it whether it’s service design or emotional design or these sort of handling these aspects that relate to the inner workings of human beings and structuring products that, I mean, in this case it’s an informational product but it could have a lot of very real world consequences for you. Finding ways to structure the way information is delivered and to provide that I don’t know whether you would call it a framework for empathy, but someway of communicating to people in a way that is adjusted and tweaked for their personality. That’s going to become increasing more important. I think there’s probably not enough work done in considering those aspects or rather more work needs to be done when considering the human factors there.


Dirk:
Yeah, yeah, for sure. I mean it ties into more mundane battle ground over these things as well. I mean I’ve talked before on the show how I kind of don’t worry about online security. I like the benefits of being online. I assume it’s outside of my control anyway to really control my data and information and so I just say se la vie, but that gets really dangerous when you’re talking about your genetic code. It’s dangerous enough when you’re dealing with your bank account, but typically you can get your money back and you can sort all that out. It’s a big pain in the ass, but whatever. If somebody gets your genetic code, you know, that ain’t changing. That’s not something you can re-key in or set up a new account for. That’s it.

The potential downside with some of these things that get more closer to sort of the biological essence of who and what we are, there’s real exposure there. I still am sort of blindly stumbling forwards just enjoying the benefits of some of that information without taking extreme measures to protect it, but I don’t know that I could protect even if I tried. I mean the hackers can get into government repositories. They can get into repositories of the biggest for-profit companies in the world so I don’t know. I actually hate thinking and talking about it, because the more I do it’s just depressing. It’s like oh god, this battle has all ready been waged and lost and all it is now is just who’s going to screw me over in potentially really bad ways?

Jon:
Yeah, on the other side of that, I mean you’ve got the folks at the personal genome project over at Harvard who are actually open sourcing their entire personal genetic code. Those are people who are maybe even farther along the spectrum than you are or that I would be and are just willing to share that information I guess for the good of science and humanity and whatever other reasons they might have. But we actually had a project with PGP and even they still need to figure out what the relationships are going to be between the personal genome project and then all the people who are involved in it, because this is really a lifelong commitment in some way when you’re submitting your genetic material for open source. Yeah, lots of difficult design and patient or user experience problems however you want to frame those in the area of genomics.


Dirk:
Yeah, you know there’s all of these — the problem is unintended consequences, right? We live in the United States. We will live very comfortably and safely so it seems yeah, open source your genome, why not? What could possibly happen? I mean history has shown us that when one group can get its foot on the throat of another group it will. The question is how far have we evolved? If we remove ourself from this wealthy, stable culture, will things still be safe? Will we still have the same sort of protections and civilization and rationality that most of us enjoy? If history is a guide, you know there’s a pretty decent indication that we won’t. Once you’ve open sourced your genome and it’s out there, I think it’s really no problem in the world we live in today, but in 150 years, what impact might that have on your descendants given changes in the world? It’s just such an unknown.

If you assume an all of the best of human nature, if you assume in all of the best of the future and the potential of our species, then yeah you can do it. The downside if you’re wrong is disastrous. I mean it’s actually kind of similar to last night I was watching the Walking Dead, I don’t know if you saw it as well, Jon, but the whole point of the show was that the leader of the group of heroes that we’ve been following for all these seasons is sort of paranoid in being overly safe and overly cautious and overly suspicious of other people, of opportunities to integrate with another group. The point that it was making was like this guy’s being an ass, he’s really going overboard, but if he doesn’t do that and if he trusts and is wrong everybody’s gone. Everything is lost and that really is probably the mindset that we should be taking with some of this stuff, but I think instead we’re slaves to shiny things and sugar and fat and a lot of stuff that makes us feel very safe and happy and are we? I don’t know.

Jon:
Yeah, that’s a scenario we’re going to have to dig into a lot more I’m sure over the coming months is the safety of genomics and that area. Let’s talk a little bit now about this last news item that I wanted to touch on, and you had mentioned earlier in the program about the Star Trek Tricorder, right? The way of determining all your health metrics with a simple scan.

Well, that vision anyway I think is present in the Scanadu product which has just recently been brought to market and they’ve announced yet another piece of their health metrics puzzle which is a urinalysis strip basically which can tell you a variety of things in just a few minutes. I believe so far they’ve got a pregnancy test which is fairly common with urinalysis, can also tell you if you’ve been smoking weed or not which is another use of urinalysis, and then also for determining diabetes. All of these things are available to the user of the Scanadu product and I think it just reemphasizes the point that we made earlier about the smart phone HIV test which is you’ve basically got the capabilities of a very expensive lab which have now been reduced to not things that you can basically put in your pocket.

I’m excited by that and I actually think that maybe this year, 2015, is going to be a real breakout year for these digital health mechanisms. What’s your take on that, Dirk?

Dirk:
You know, I am not plugged in enough to the underlying technologies and the way they are evolving to make a statement about this year being a breakout year or not. I mean certainly we’re seeing interesting products. Certainly, we’re seeing advance, but how far are we from that tipping point where it goes from this little feature, this little thing that’s really cool but you’re not really going to, as a consumer certainly, you’re not really going to do very much with it to something that is more of a robust product or a truly killer app. I don’t know.


Jon:
Yeah, I mean for myself, you know this idea of the smart phone as the intermediary between you and the health system or as kind of this tool that could help the health system scale in more robust fashion. I didn’t really buy into that argument before, because a lot of the mHealth solutions that I’ve seen, while interesting, just didn’t have that completeness I guess. With all these diagnostic tools becoming available at such an inexpensive price point, I can kind of see now the potential there for the smart phone or the mobile device to really be a center for managing health in a way that when you just say digital health, I don’t know if it really captures that, but it’s almost like all of these test and dongles and urinalysis strips that sort of plug into the phone like it made for me a lot more real that possibility. I think that’s what I’m reacting to in part and then of course just the maybe we can call it the shiny new object syndrome, but it’s got me really excited about the space in general.


Dirk:
Yeah, I mean it is an exciting space and the potential for it to really change the world in ways that aren’t just conveniences but are really important to ourselves as people is significant.


Jon:
Listeners, remember that while you’re listening to the show, you can follow along with the things that we’re mentioning here in real time. Just head over to thedigitalife.com that’s just one L in the Digital Life and go to the page for this episode. We’ve included links to pretty much everything mentioned by everybody so it’s a rich information resource to take advantage of while you’re listening or afterward if you want to remember something that you liked. If you want to follow us outside of the show, you can follow me on Twitter @jonfollett, that J-O-N F-O-L-L-E-T-T, and of course the whole show is brought to you by Involition Studios which you can check out at goinvo.com. That’s G-O-I-N-V-O-DOT-COM. Dirk?


Dirk:
You can follow me on Twitter @dknemeyer. That’s AT-D-K-N-E-M-E-Y-E-R or email me at dirk@goinvo.com.


Jon:
So that’s it for episode 91 of The Digital Life. For Dirk Knemeyer, I’m Jon Follett, and we’ll see you next time.