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August 20 2013

Les Google Glass pourront voir si vous regardez la publicité - Numerama

Les Google Glass pourront voir si vous regardez la publicité - Numerama
http://www.numerama.com/magazine/26765-les-google-glass-pourront-voir-si-vous-regardez-la-publicite.html

Un brevet déposé par Google en 2011, tout juste publié, décrit un mécanisme qui permettrait de faire payer les annonceurs uniquement lorsque leurs #publicités sont effectivement regardées par les consommateurs, grâce aux Google Glass et autres lunettes connectées. On sait maintenant à quoi serviront vraiment les Google Glass : mesurer ce que vous regardez ! Tags : fing internetactu internetactu2net (...)

#marketing #GoogleGlass #quantifiedself #bodyware

August 19 2013

Que perdons-nous quand tout est enregistré - NYTimes.com

Que perdons-nous quand tout est enregistré - NYTimes.com
http://bits.blogs.nytimes.com/2013/08/17/whats-lost-when-everything-is-recorded/?_r=0

L’enregistrement de nos conversations par la NSA pose la question de ce que l’on peut faire en enregistrant nos #voix. Les dispositifs techniques pour se faire se multiplient et l’analyse par ordinateur de nos voix également permettant de produire des métadonnées de nos discours selon notre intonation, nos hésitations, pauses et interjections. C’est ce que fait Ron Kaplan, chez Nuance Communications : distinguer les modèles et caractéristiques de nos échanges vocaux, pour aller au-delà de la seule (...)

#bodyware #corps #quantifiedself

June 01 2012

Four short links: 1 June 2012

  1. BeWell App (Google Play) -- continuously tracks user behaviors along three key health dimensions without requiring any user input — the user simply downloads the app and uses the phone as usual. Finally, someone tracking my behaviour for my own good.
  2. Met 3D -- the Metropolitan Museum of Art hosts its first 3d printing and scanning hackathon. [O]n June 1 and 2, approximately twenty-five digital artists and programmers will gather at the Met to experiment with the latest 3-D scanning and replicating technologies. Their aim will be to use the Museum's vast encyclopedic collections as a departure point for the creation of new work. THIS. IS. AWESOME. (via Alison Marigold)
  3. The Perfected Self (The Atlantic) -- everything you knew about B. F. Skinner was wrong, and you should know about him because you're using his techniques to lose weight, stop smoking, and do your homework. (via Erica Lloyd)
  4. Google Blockly -- (Google Code) A web-based, graphical programming language. Users can drag blocks together to build an application. No typing required. Open sourced.

May 25 2012

Top Stories: May 21-25, 2012

Here's a look at the top stories published across O'Reilly sites this week.

White House launches new digital government strategy
The nation's new strategy for digital government is built on data, shared services, citizen-centrism, and consistent methodologies for privacy and security.

Quantified me
Jim Stogdill is trying to walk the line between obsessive tracking and an open-ended approach to motivation.

A gaming revolution, minus the hype
"Playful Design" author John Ferrara discusses gaming's place in cultural transformation, and he offers five universal principles of good game design.

What do mHealth, eHealth and behavioral science mean for the future of healthcare?
Dr. Audie Atienza says we're just at the beginning of discovering how to best develop and utilize mobile technology to improve the health of individuals and the public.

Social reading should focus on common interests rather than friend status
In this TOC podcast, ReadSocial co-founder Travis Alber discusses her company's focus on building their platform without tying it to your social graph.


Velocity 2012: Web Operations & Performance — The smartest minds in web operations and performance are coming together for the Velocity Conference, being held June 25-27 in Santa Clara, Calif. Save 20% on registration with the code RADAR20.

White House photo: white house by dcJohn, on Flickr

May 22 2012

Quantified me

For some reason I have an aversion to the quantified self terminology. I guess I'm suspicious of excessive overt tracking of stuff that I hope to make into unconscious habit. It probably goes back to when I used to be a runner. I ran a couple of marathons and I would of course log every run and used upcoming races to motivate my training. I ran with a pulse monitor and used the real-time feedback to adjust my pace to the intention of each training session.

I was incredibly disciplined about my training right up until I stopped improving. Once I plateaued I just couldn't stick with it. I experienced a similar pattern with biking, rowing, yoga, and everything else I tried. Train hard, track everything, plateau, quit.

Then a few years ago I read about a study that looked at motivation and it made the point that sometimes leaving things open ended actually improves our ability to stick with it. I've been looking for that study for two years but can't find it again. It has stuck in my head though and fundamentally changed how I think about things. It's made much more skeptical of the value of competitions and other goals in achieving long-term fitness. And something is different for me now because I've been doing CrossFit for three years without quitting. Of course, it might just be that I haven't plateaued yet. But I also think nurturing an open-ended mindset has helped.

Having plateaued and quit so many times I guess I'm just skeptical of the value of tracking the minutia of my exercise life. I wouldn't have known I plateaued if I hadn't tracked the data after all.

So not too long ago when Sara Winge forwarded me a link to an article on the "datasexual" with the subject line "You've been memed" I was taken aback. "Me? I don't track stuff. I don't own a Fitbit. In fact, I'm a huge skeptic of the value of all this stuff. To me it seems too much like putting the cart of technology before the horse of just doing the work." But then I thought about it honestly and I had to admit it. Who am I kidding? I'm an obsessive tracker.

I track every Crossfit workout on Beyond The Whiteboard. I started a paleo / ancestral health diet in December and I use a kitchen scale to measure portions. I kept a journal of every meal for three months and when that got cumbersome I started taking a picture of them with my phone. I do it to encourage consciousness of what I'm eating and to make sure I'm keeping my macronutrient balance where it should be. I weigh myself at least three times each week and log weight, waist, and neck measurements each time to estimate body fat.

Quantiifed data

Not too long ago after I rowed what felt like a fast 2k during a crossfit workout I dug up my old logs from the '90s to see how it compared to the twenty-something me (slower of course, but not awful). I still had those logs and knew where to find them.

From there it gets more obsessive. Once I changed my eating habits I started getting a full lipid panel and other tests every three months to assess the impact of my new high fat / low carb diet (I get over 2/3 of calories from fats now). The next time around I plan to add tests for inflammation markers and a few other things.

I wasn't happy with my doctor only being able to order fasting blood sugar though, so I bought a glucometer and started monitoring my own real-time blood sugar. I measure fasting and +1, +2, and +3 hour postprandial glucose levels after various meals to evaluate my insulin response and to better tune my diet. I also occasionally measure pre- and post-workout glucose levels to optimize when to workout relative to mealtime.

Periodic at home A1c tests verify that my long-term glucose levels are in keeping with what I'm measuring in real time — as a correlation to verify test accuracy and to help me interpret the short-term results. Oh, and I ordered a 23andMe test kit to see (among other things) if I have any genetic disposition to diabetes.

So, I guess I have to admit it. Quantifying the self isn't just something other people do, it's something I do. Yet I remain a skeptic.

The line I'm trying to walk is between obsessive tracking that results in post-plateau burnout and using tracking to maintain awareness and intention while trying to remain open ended. "Maybe I'll work out today." "Maybe I'll lose a few pounds, or maybe I'll gain a few." But at the same time I want to take advantage of the awareness that comes from tracking. More importantly, I want to know what the data says about how healthy I am. A degradation in insulin response wouldn't just be a problem with a plateauing exercise program after all, it would have major long-term health impact.

Related:

May 10 2012

Four short links: 10 May 2012

  1. Gravity in the Margins (Got Medieval) -- illuminating illuminated manuscripts with Mario. (via BoingBoing)
  2. Hours Days, Who's Counting? (Jon Udell) -- What prompted me to check? My friend Mike Caulfield, who’s been teaching and writing about quantitative literacy, says it’s because in this case I did have some touchstone facts parked in my head, including the number 10 million (roughly) for barrels of oil imported daily to the US. The reason I’ve been working through a bunch of WolframAlpha exercises lately is that I know I don’t have those touchstones in other areas, and want to develop them. The idea of "touchstone facts" resonates with me.
  3. Spotting Fake Reviewer Groups in Consumer Reviews (PDF) -- gotta love any paper that says We calculated the "spamicity" (degree of spam) of each group by assigning 1 point for each spam judgment, 0.5 point for each borderline judgment and 0 point for each non-spam judgment a group received and took the average of all 8 labelers. (via Google Research Blog)
  4. Visualizing Physical Activity Using Abstract Ambient Art (Quantified Self) -- kinda like the iTunes visualizer but for your Fitbit Tracker.

May 08 2012

Four short links: 8 May 2012

  1. Gmail Vault -- app to backup and restore the contents of your gmail account. (via Hacker News)
  2. Leaving Apps for HTML5 (Technology Review) -- We sold 353 subscriptions through the iPad. We never discovered how to avoid the necessity of designing both landscape and portrait versions of the magazine for the app. We wasted $124,000 on outsourced software development. We fought amongst ourselves, and people left the company. There was untold expense of spirit. I hated every moment of our experiment with apps, because it tried to impose something closed, old, and printlike on something open, new, and digital. (via Alex Howard)
  3. Your Two Weeks of Fame, and Your Grandmother's (PDF) -- researchers mined 20C news articles to see whether shrinking news cycles caused briefer fame. Instead they found duration of celebrity is largely steady across the entire century, though depending on how they measured celebrity they could sometimes see changes in the duration with the most famous. (via Google Research)
  4. Dan Pink's Travel Tips -- the author travels a lot and has passed on his tips in these videos.

April 26 2012

Fitness for geeks

Programmers who spend 14 hours a day in front of a computer terminal writing code know how hard it is to step out of the cubicle and learn how to live a more healthy lifestyle. But getting fit doesn't need to be so daunting, and a growing number of technophiles are finding ways to make the process more appealing and relevant to their interest in data, design, and discovery. The increasing popularity of projects such as Quantified Self, smartphone apps, and gadgets dedicated to monitoring your body, generating metrics and routines for your exercise regime, and tracking your progress has created a community of like-minded geeks to share in your struggle, and even make it fun.

I recently talked with Bruce Perry, author of the just-released Fitness for Geeks, about some of the tools this crowd is using, some others they might be missing, and how the rest of us can use these tips to get healthy too. Highlights from our conversation include:

  • Debug your wetware. A programmer becomes fitter by becoming more knowledgeable about her internal software and learning how to optimize it for maximum performance and efficiency. [Discussed at the 00:21 mark]
  • Get some sleep. This one's pretty obvious, but now there are many new ways to quantify and analyze your sleep. Zeo Sleep Manager monitors your brainwaves during sleep and displays graphs for your review when you wake up, communicating wirelessly to a software-enabled clock and the web, Use your personal dashboard to identify your sleep cycles, analyze your REM, and measure the effects of different daily events (such as a stressful day or a drink before bed) on sleep. [Discussed at the 1:54 mark]
  • Use apps to assist your workouts and quantify your health. Tools such as FitBit, Nike+, Garmin Connect, AlpineReplay, and RestWise connect you and your health to the digital world where so much of the rest of your life is lived. [Discussed at the 3:46 mark]
  • Just get outside. You don't need a sophisticated routine, as long as you're moving. Doing the same thing over and over tends to create a static effect that plateaus. But you can randomize your workouts to make them more interesting. Tools such as GAIN Fitness and CrossFit's Workout of the Day (WOD) Generator will use algorithms to generate your own daily protocol. [Discussed at the 4:53 mark]
  • Fast. Intermittent fasting has been shown to lower blood pressure, normalize insulin and glucose levels, and even provide more efficient workouts while fasting. The basic guidelines for intermittent fasting is to eat only within an 8-hour window (eat dinner, don't eat at night, skip breakfast) and go the remaining16 hours on just water, coffee, and tea. [Discussed at the 7:26 mark]
  • Resist extremes. Bruce says it's okay to do a marathon or similarly challenging event for the experience, but that the oxidative stress can have a significantly negative effect on your overall and long-term health. Instead, revolve your exercise program around short-duration, high-intensity training, such as sprinting, followed by 30-40 minutes of high-intensity weights. [Discussed at the 09:09 mark]
  • Practice good stress. Various forms of acute stresses (known as hormesis) — such as moderate and high-intensity exercise, hot and cold exposure, one drink at night — can improve your health. [Discussed at the 13:02 mark]
  • Personal experiences with fitness apps. Bruce talks about using Endomondo, GPS data, and Google Earth to scout out an off-piste ski area, and I mention my own use of Google's MyTracks Android app for marathon training. [Discussed at the 15:19 mark]

The full interview is available in the following video:

Fitness for Geeks — This guide will help you experiment with one crucial system you usually ignore — your body and its health. Long hours focusing on code or circuits tends to stifle notions of nutrition, but with this book you can approach fitness through science.

February 28 2012

Four short links: 28 February 2012

  1. Designing RESTful Interfaces (Slideshare) -- extremely good presentation on how to build HTTP APIs.
  2. Manipulating History for Fun and Profit -- if you want to make websites that are AJAX-responsive but without breaking the back button or preventing links, read this.
  3. Why Textbooks Are So Broken (Salon) -- Let's say a publisher hires a developer for a certain low-bid fee to produce seven supplemental math books for grades 3-8. The product specs call for each student book and teacher guide to have page counts of roughly 100 pages and 80 pages, respectively. The publisher wants these seven books ready for press in five weeks—over 1,400 pages. To put this in perspective, in the not too recent past at least six months would be allotted for a project of this size. But publishers customarily shrink their deadlines to get a jump on the competition, especially in today's math market. Unreasonable turnaround times are part of the new normal, something that almost guarantees a lack of quality right out of the gate.
  4. exmobaby -- wireless biosensor baby pyjamas send ECG, skin temperature, and movement data via Zigbee. (via Jo Komisarczuk)

January 13 2012

Top Stories: January 9-14, 2012

Here's a look at the top stories published across O'Reilly sites this week.

What is big data?
It's the hot trend in software right now, but what does big data mean, and how can you exploit it? Strata chair Edd Dumbill presents an introduction and orientation to the big data landscape.

Can Maryland's other "CIO" cultivate innovation in government?
Maryland's first chief innovation officer, Bryan Sivak, is looking for the levers that will help state government to be smarter, not bigger. From embracing collective intelligence to data-driven policy, Sivak is defining what it means to be innovative in government.

Three reasons why we're in a golden age of publishing entrepreneurship
Books, publishing processes and readers have all made the jump to digital, and that's creating considerable opportunities for publishing startups.

The rise of programmable self
Taking a cue from the Quantified Self movement, the programmable self is the combination of a digital motivation hack with a digital system that tracks behavior. Fred Trotter looks at companies and projects relevant to the programmable-self space.

A venture into self-publishing
Scott Berkun turned to self-publishing with his latest book, "Mindfire." In this TOC podcast, Berkun discusses the experience and says the biggest surprise was the required PR effort.


Tools of Change for Publishing, being held February 13-15 in New York, is where the publishing and tech industries converge. Register to attend TOC 2012.

January 11 2012

The rise of programmable self

Programmable self is a riff on the Quantified Self (QS). It is a simple concept:

Quantify what you want to change about yourself + motivational hacks = personal change success.

There are several potential "motivation hacks" that people regularly employ. The simplest of these is peer pressure. You could tell all of your co-workers every morning whether you kept your diet last night, for instance. Lots of research has shown that sort of thing is an effective motivator for change. Of course, you can make peer pressure digital by doing the same thing on Facebook/Twitter/Google+/whatever. Peer pressure has two components: shame and praise. It's motivating to avoid shame and to get praise. Do it because of a tweet and viola, you have digital peer pressure motivation.

Several books have recently popularized using money, in one form or another, as a motivational tool. There is some evidence, for instance, that people feel worse about losing $10 then they feel good about earning $10. This is called loss aversion, and it can easily be turned into a motivational hack. Having trouble finishing that book? Give 10 envelopes with $100 each to your best friend. Instruct them to mail the envelopes to your favorite (or most hated) charity for each month that you do not finish a chapter. Essentially, you've made your friend a "referee" of your motivational hack.

So, is there any potential to automate this process? To use software to hack your own motivation? One of the coolest applications that does just that is Stickk.com, which is designed to electronically manage contracts you make with yourself.

But that, by itself, is not programmable self.

Programmable self is the combination of a digital motivation hack, like Stickk, with a digital system that tracks behavior, like Fitbit (that's the Quantified Self part). You have to have both. Recently, for example, Stickk started supporting the use of the Withings Scale to support weight entries. Withings is a Wi-Fi-enabled scale that broadcasts your weight automagically to the Withings servers. From there, Withings will send your weight generally wherever you want: HealthVault, other personal health record (PHR) systems, or over to Stickk.com. With that feature, Stickk became a programmable-self platform.

Stickk is pretty old, and Lose it or Lose It, which is focused specifically on losing weight, is also ancient in Internet time. It launched in 2009. The site requires you to take a picture of a weekly weigh in (you actually photograph the scale) and send it in. That counts as digital tracking, but I wonder if it supports Withings (or if it will).

In October 2011, Beeminder launched, billing itself as a direct Stickk competitor, but "for data geeks." Indeed, it is a little geeky: Beeminder is focused on weight change and other goals that are numerically similar to weight gain. The notion is that there is a proper path for the improvement of certain numbers — as well as a little "data jitter" to eliminate — in order to improve. Beeminder also refers to the classical term for the lack of self discipline: akrasia — so bonus points for that.

Last November, The Eatery launched from Massive Health. Massive Health is a massively funded dream team, and their first app is a classic programmable-self experiment. You simply take pictures of your food with your camera (digital tracking = photos) and let others rate your food choices (motivation hack = praise/shame). It's a good idea, and you can expect lots more from Massive Health that qualifies as programmable self.

Recently, GymPact made a big splash, even ending up in a New York Times blog post. Gympact is an iOS (soon Android) app that lets you check in at the gym. If you fail to check in, you get charged a fee. If you do keep your commitment to go to the gym, then you also earn some of the money from all of the people who failed to go to the gym.

Finally, Buster Benson and Jen S. McCabe are working on Bud.ge, which might be the first of the programmable-self platform plays.

All of these count as programmable self. I seriously doubt that any of these companies were aware of my original interview about programmable self or would even be comfortable with the term, which sounds pretty geeky and devious. (Which is, of course, why I love it.)

Other friends of mine in the serious games/games for health/gamification movement would probably count as programmable self, too. But some of them seem convinced that "fun" can have a deeper component in motivation then some of the more aggressive techniques that I, and other programmable self people, seem to favor. I should also mention that I am hardly the only one in the QS movement stumbling in this direction.

I will be writing about programmable self on Radar occasionally, but there is a lot more going on than I can track here . That's why I've also made a Tumblr about the subject and filled it with all of the "software for behavior change" goodness that anyone can take. My @fredtrotter Twitter account is mostly focused on programmable self as well.

Most importantly, I want to hear about what you have tried to do with your own personal change hacks, especially those that impact your health in one way or another. For that, I have set up a Programmable Self Google Group. Please join us. Some of the top minds in behavior change are already subscribers.

The Quantified Self movement is not primarily about the "tool creators" who make stuff for people to use, but a movement of users who defy the boundaries of tools and manage to create innovative quantification tools on their own. Many of these efforts also count as programmable-self approaches. No discussion of programmable self can ignore the work of individuals, so here is a decidedly non-exhaustive list of people innovating in this space:

Strata 2012 — The 2012 Strata Conference, being held Feb. 28-March 1 in Santa Clara, Calif., will offer three full days of hands-on data training and information-rich sessions. Strata brings together the people, tools, and technologies you need to make data work.

Save 20% on registration with the code RADAR20

January 05 2012

Epatients: The hackers of the healthcare world

I help build open source software tools that patients can use to have greater control and influence over their own healthcare (like the Direct Project and Your Doctors Advice). As as result, I've become quite familiar with other tools that do the same sorts of things. There is a community of patients who are deeply interested in the ways in which they can become more engaged and how they can specifically use technology to achieve this. This community calls themselves epatients. The epatient community asked me to write a short collection of resources for "becoming an epatient."

The "e" in epatient is intentionally obscure. The initial assumption is that the "e" stands for "electronic," as it does in "email." But in fact, the "e" stands for "engaged" or "empowered." Nonetheless, reference to email is intentional: The epatient community recognizes that leveraging data is a critical part of empowering a person who happens to be sick. Patients must be "electronic" to become fully "engaged." I think of epatients as the healthcare equivalent of makers and hackers. More importantly, they are the people I have in mind when I write software.

Engaged patients get better healthcare. Not just a little bit better. Much better. This is not a thesis I am prepared to defend here, except to drop a link to the Journal of Participatory Medicine, which is a good resource for those seeking a full chronicle of this engaged effect (the benefits of engagement have been documented in the healthcare literature for years).

Let's go over some simple concepts that the rest of my epatient advice and resources are based on:

  • Your doctors are probably not managing your healthcare information. You should assume it is your responsibility. Otherwise, the people involved in your treatment process will often presume that this information simply does not exist.
  • Other patients, with similar conditions to yours, can have better information about your health problem than your doctors have.
  • Like the highway system, the healthcare system is generally beneficial, but there are dangers, and you need to learn to avoid them.

And here are two things you should keep in mind:

  • Whenever I say "patient," I actually mean "the patient/caregiver team." Often, the patient will not have the energy to do what is necessary to be fully engaged. It is critical that when the patient cannot be an epatient, that at least the patient's team be an epatient proxy.
  • In regard to the "better information" I mentioned above, I don't mean that your doctor is typically wrong and another patient is typically right about your diagnosis or treatment options. While that does happen on occasion, it is not the norm. Another patient's information is "better" because your doctor typically does not have the visceral experience of being a patient. Your doctor doesn't understand which lotion can make all of the difference or what position might let you get some sleep after a rough procedure. There is simply no substitute for experience. Sometimes that experience can make your life a little easier, and sometimes it can help you get the right treatments that literally will save your life. (This is the gist of epatient Dave deBronkart's story.)

The first thing an epatient needs to do is find the right epatient community. For any common illness or group of symptoms, there is a community of people who are already connecting with each other over the Internet. For people with a recent cancer diagnosis ACOR is probably the right place to start. This is one of the oldest, largest and most active epatient communities. Sometimes, the tools that a particular community of epatients choose might be a little old school — things like traditional forums, or even list-serves. Do not judge a community by its adoption of technology, judge it by its activity level.

There are efforts to create technology solutions that are specifically designed to enable patient communities. For a good example, check out PatientsLikeMe, which is representative of patient communities drifting more toward "patient social media." I am happy to say that epatient tool makers like me are coming up with cool stuff constantly. But the mature epatient is not impressed by new and shiny. Remember, it is the relationships and insights that matter here, not the technology. Whenever possible, you want the right information delivered over the wrong technology medium, rather than the other way around.

For any serious common healthcare condition, there are probably several different communities of patients online that you can meet with. For common conditions, you might also be able to find a specific meetup in your area, or at least some kind of epatient meetup. If you have a rare disease, you might have trouble finding local resources, and you might only have one or two online communities to choose from. But for rare diseases, the online patient community as a whole is typically better informed than the average primary care physician on a particular condition. Sometimes a physician might not understand or recommend treatment options that are offered outside their local healthcare community, an issue that can be compounded when they are unfamiliar with a particular type of diagnosis. It is even more critical for rare disease patients or caregivers to find a patient community and listen to them. For rare diseases and conditions, it is critical to understand what treatment options are offered in other areas and to be fully informed regarding sham clinics that often operate in under-regulated areas.

How do you know you've found the right community? Here's a good rule of thumb: If you can't get a real response to a simple health question from the community within 24 hours, you should probably move on if there are other options. Healthy epatient communities are vibrant and alive.

You should also consider joining the Society for Participatory Medicine (SPM). The mailing list for the SPM is one of the most important cross-condition meeting places for epatients.

If you are interested in the technology side, also pay attention to Health 2.0 (#health20), which has a Patients 2.0 (#patients20) community that is concerned with the "electronic" part of epatient. Generally, I find that Health 2.0 is the right place to find out-of-the-box thinking on healthcare information systems, especially those offered directly to consumers. I go there to get the down-low on my competitors and to find collaborators. Matthew Holt from Health 2.0 cross pollinates the healthcare blog, which is also worth adding to your RSS reader.

The cross-disease epatient community uses Twitter more than Facebook or Google+ (for the time being), and the #epatient hashtag is your friend. I also recommend following @epatientdave, @reginaholliday, and @hhask as good starter accounts. If you care about the tech aspects of epatients, then check out @NateOsit or myself (@fredtrotter). And if you're interested in the activist portion of the epatient community, then look at the Occupy Healthcare roster.

Once your healthcare information gets past a certain basic level of complexity, it becomes important that you have a personal health record (PHR). Your doctors should, eventually, be able to update your PHR. That means you need a PHR that supports the Direct Project. Right now, that is a short list, with Microsoft's HealthVault at the top. As a FOSS advocate, that is not an endorsement I make lightly, but Microsoft's health IT team has been surprisingly supportive of open source (i.e. patient empowering) technologies and they have relatively mature Direct support. Indivo is pretty much the only one to consider if you want to run your own PHR (it's open source), but its Direct support is lagging. Something you should keep in mind: If you have only one doctor at a time, you do not need to obsess about the coordination of your own healthcare information; if you have more than one doctor, you do. You can manage this information with a PHR, or a notebook, or even an infographic. What matters is that you need to do it, and do it carefully.

Some of the people in the Quantified Self movement are patients who are trying to use data about themselves to improve their health. If that interests you (if you have a chronic condition, it should), then take a look at the Quantified Self website.

There are two types of patients: those who are in crisis mode and those who are in maintenance mode. If you are in crisis mode, and you feel like your whole world has been turned upside down, then I recommend you read Dr. Carolyn Oliver's book "Cautious Care: A Guide for patients." The newest edition of this book is also available as a series of free PDF downloads from the Cautious Patient Foundation website. Here are direct links to the hospital part and the outpatient part. Dr. Oliver's book is like a "defensive driving crash course" for the healthcare system. If you are going to be staying up all night at the hospital (as a caregiver or a patient), and you have no idea what you should be paying attention to, this is the book that you should be reading. (Disclosure: I work for Dr. Oliver at the Cautious Patient Foundation.)

If you are in maintenance mode, you should still start with Dr. Oliver's books, but you can also extend your reading to the classics of the epatient movement. That process should always begin with the e-patient white paper, and I also recommend the book "Laugh, Sing, and Eat Like a Pig" for ethos purposes. Go to e-patients.net and click "categories" to find the content on that blog that seems relevant to you.

If you are well, consider spending some time with these resources. When you become sick you do not want to be learning how this stuff works. You will probably ignore this advice, and that's fine. Just try to remember that this advice is here when you need it. Also, remember that these are not instructions for how to handle your illness; they're instructions for finding the instructions on how to handle your illness.

If you are newly sick, then what I have written here will sound overwhelming. You are tired, scared and confused (and you don't need some arrogant geek telling you that you need to use technology to look over your doctor's shoulder). Recognize that you will not have the capacity to bring your intellect to bear on this the way you could when you were healthy. It is very tempting to just check out and trust that the healthcare system is going to take good care of you. But please trust me on this: That's a bad idea. The default settings on the healthcare system really suck. Your doctors will provide you with options, but they do not have the right perspective to help you make the right choices. Patients often ask their doctors, "What would you do if you were me?" The very, very best doctors reply, "But I am not you." What you need to find are other people who share your values, who are living with the consequences of having made the choices that you are facing. I say this with both a deep sense of pride and a great deal of humility: My spiritual predecessors (health geeks) have made sure that the Internet can provide you with connections to these people.

The Internet will make it easier to connect, which is awesome. If you cannot summon the strength to do this, fine — entrust someone you love with the task of connecting for you. I truly believe that it is impossible to be an epatient alone. Moreover, I believe that it is impossible not to be an epatient if you have shared your burden with even one other patient.

For those who need encouragement with their ongoing efforts to connect to others with the same suffering, I leave you with some video happiness. Be sure to watch the whole thing:

Meaningful Use and Beyond: A Guide for IT Staff in Health Care — Meaningful Use underlies a major federal incentives program for medical offices and hospitals that pays doctors and clinicians to move to electronic health records (EHR). This book is a rosetta stone for the IT implementer who wants to help organizations harness EHR systems.

Related:

November 18 2011

Four short links: 18 November 2011

  1. Learning With Quantified Self -- this CS grad student broke Jeopardy records using an app he built himself to quantify and improve his ability to answer Jeopardy questions in different categories. This is an impressive short talk and well worth watching.
  2. Evaluating Text Extraction Algorithms -- The gold standard of both datasets was produced by human annotators. 14 different algorithms were evaluated in terms of precision, recall and F1 score. The results have show that the best opensource solution is the boilerpipe library. (via Hacker News)
  3. Parallel Flickr -- tool for backing up your Flickr account. (Compare to one day of Flickr photos printed out)
  4. Quneo Multitouch Open Source MIDI and USB Pad (Kickstarter) -- interesting to see companies using Kickstarter to seed interest in a product. This one looks a doozie: pads, sliders, rotary sensors, with LEDs underneath and open source drivers and SDK. Looks almost sophisticated enough to drive emacs :-)

November 10 2011

Four short links: 10 November 2011

  1. Steve Case and His Companies (The Atlantic) -- Maybe you see three random ideas. Case and his team saw three bets that paid off thanks to a new Web economy that promotes power in numbers and access over ownership. "Access over ownership" is a phrase that resonated. (via Walt Mossberg)
  2. Back to the Future -- teaching kids to program by giving them microcomputers from the 80s. I sat my kids down with a C64 emulator and an Usborne book to work through some BASIC examples. It's not a panacea, but it solves a lot of bootstrapping problems with teaching kids to program.
  3. Replaying Writing an Essay -- Paul Graham wrote an essay using one of his funded startups, Stypi, and then had them hack it so you could replay the development with the feature that everything that was later deleted is highlighted yellow as it's written. The result is fascinating to watch. I would like my text editor to show me what I need to delete ;)
  4. Jawbone Live Up -- wristband that sync with iPhone. Interesting wearable product, tied into ability to gather data on ourselves. The product looks physically nice, but the quantified self user experience needs the same experience and smoothness. Intrusive ("and now I'm quantifying myself!") limits the audience to nerds or the VERY motivated.

October 21 2011

Four short links: 21 October 2011

  1. What Mozilla is Up To (Luke Wroblewski) -- notes from a talk that Brendan Eich gave at Web 2.0 Summit. The new browser war is between the Web and new walled gardens of native networked apps. Interesting to see the effort Mozilla's putting into native-alike Web apps.
  2. YouTube Insult Generator (Adrian Holovaty) -- mines YouTube for insults of a particular form.
  3. Ultrasound for iPhone (Geekwire) -- this personal sensor is $8000 today, but bound to drop. I want personal ultrasound at least once a month. How long until it's in the $200-500 range? (via BERG London)
  4. Web Applications Class at Stanford OpenClassroom -- a Ruby on Rails class taught by John Ousterhout, creator of TCL/Tk and log-structured filesystems.

October 06 2011

Four short links: 6 October 2011

  1. Sleep Patterns -- my friend Tom has been tracking his baby's sleeping patterns. We learnt that over the last month or so, our 5 month old baby has never gone to sleep before 10pm. We were trying to get him to go to sleep at 7 or 8pm and this was not working at all. Now it is playtime until 10 and then he just goes to sleep with no trouble, stress or crying at around 10 or 10:30. Data captured with Baby Care android app (over 500k installs) and graphed it in Python. As a father of two, this is the best ad for the quantified self I've seen.
  2. Playspent -- a web app that challenges you to balance dollars like someone on the poverty line. This makes the constraints of poverty real in the same way that Sims brings city planning to life.
  3. Context vs Core -- transcription (albeit an imperfect one) of Geoffrey Moore's excellent talk about separating context from core, innovation, and business. Most of what you do is context, not core, and the most frustrating thing in your life is that the context gets in the way of the core that your context. [...] If you don’t get up in the morning and say, core before context, you’ll come to the end of the day and find out that your e-mail trail beat you to death.
  4. Coders for Social Good (Dave Neary) -- notes on the Humanitarian track at the FOSS World Forum. This is stuff that matters. There's even open source microfinance software.

August 17 2011

Four short links: 17 August 2011

  1. Tablib -- MIT-licensed open source library for manipulating tabular data. Reputed to have a great API. (via Tim McNamara)
  2. Stanford Education Everywhere -- courses in CS, machine learning, math, and engineering that are open for all to take. Over 58,000 have already signed up for the introduction to machine learning taught by Peter Norvig, Google's Director of Research.
  3. Wearable LED Television -- 160x120 RGBs powered by a 12v battery, built for Burning Man (natch). (via Bridget McKendry)
  4. Temporary Tattoo Biosensors (Science News) -- early work putting flexible sensors into temporary tattoos. (via BoingBoing)

August 12 2011

Four short links: 12 August 2011

  1. Hippocampus Text Adventure -- written as an exercise in learning Python, you explore the hippocampus. It's simple, but I like the idea of educational text adventures. (Well, educational in that you learn about more than the axe-throwing behaviour of the cave-dwelling dwarf)
  2. Pandas -- BSD-licensed Python data analysis library.
  3. Building Lanyrd -- Simon Willison's talk (with slides) about the technology under Lanyrd and the challenges in building with and deploying it.
  4. Electronic Skin Monitors Heart, Brain, and Muscles (Discover Magazine blogs) -- this is freaking awesome proof-of-concept. Interview with the creator of a skin-mounted sensor, attached like a sticker, is flexible, inductively powered, and much more. This represents a major step forward in possibilities for personal data-gathering. (via Courtney Johnston)

August 04 2011

Four short links: 4 August 2011

  1. Skate Through NYC With A GoPro -- this is the first I've seen of the GoPro cameras, which are two dimensions of clever. First, it's video instrumentation for activities where we haven't had this before. Second, it's clever specialization of the Flip-style solid-state recording videocameras. (via Infovore)
  2. Pulse Sensor -- open source heart rate sensor project on Kickstarter. DIY hardware has made the quantified self phenomenon possible; look for many more gadgets that build your personal data cloud. (via Brady Forrest)
  3. Science's Bad Ideas (Peter Griffin) -- a recap of a lecture by Lord Robert Winston where he the dark side of science and catalogues numerous instances where scientific progress has been accompanied by unforeseen consequences, ethical atrocities and detrimental impacts on society. [...] The overall message is that science can’t remain aloof from society, that scientists must engage and better understand the needs and concerns of society as they introduce new technologies that could bring about profound changes.
  4. A Game With a Windfall For a Knowing Few -- gambling is a tax on bad math, but poorly designed games sometimes rewards those who are good at math. Because of a quirk in the rules, when the jackpot reaches roughly $2 million and no one wins, payoffs for smaller prizes swell dramatically, which statisticians say practically assures a profit to anyone who buys at least $100,000 worth of tickets. During these brief periods - “rolldown weeks’’ in gambling parlance - a tiny group of savvy bettors, among them highly trained computer scientists from MIT and Northeastern University, virtually take over the game. Just three groups, including the Selbees, claimed 1,105 of the 1,605 winning Cash WinFall tickets statewide after the rolldown week in May, according to lottery records. (via Hacker News)

July 30 2011

Report from Open Source convention health track, 2011

Open source software in health care? It's limited to a few pockets of use--at least in the United States--but if you look at it a bit, you start to wonder why any health care institution uses any proprietary software at all.

What the evidence suggests

Take the conference session by University of Chicago researchers commissioned to produce a report for Congress on open source in health care. They found several open source packages that met the needs for electronic records at rural providers with few resources, such as safety-net providers.

They found that providers who adopted open source started to make the changes that the adoption of electronic health records (or any major new system) is supposed to do, but rarely does in proprietary health settings.

  • They offer the kinds of extra attention to patients that improve their health, such as asking them questions about long-term health issues.

  • They coordinate care better between departments.

  • They have improved their workflows, saving a lot of money

And incidentally, deployment of an open source EHR took an estimated 40% of the cost of deploying a proprietary one.

Not many clinics of the type examined--those in rural, low-income areas--have the time and money to install electronic records, and far fewer use open source ones. But the half-dozen examined by the Chicago team were clear success stories. They covered a variety of areas and populations, and three used WorldVistA while three used other EHRs.

Their recommendations are:

  • Greater coordination between open source EHR developers and communities, to explain what open source is and how they benefit providers.

  • Forming a Community of Practice on health centers using open source EHRs.

  • Greater involvement from the Federal Government, not to sponsor open source, but to make communities aware that it's an option.

Why do so few providers adopt open source EHRs? The team attributed the problem partly to prejudice against open source. But I picked up another, deeper concern from their talk. They said success in implementing open source EHRs depends on a "strong, visionary leadership team." As much as we admire health providers, teams like that are hard to form and consequently hard to find. But of course, any significant improvement in work processes would require such a team. What the study demonstrated is that it happens more in the environment of an open source product.

There are some caveats to keep in mind when considering these findings--some limitations to the study. First, the researchers had very little data about the costs of implementing proprietary health care systems, because the vendors won't allow customers to discuss it, and just two studies have been published. Second, the sample of open source projects was small, although the consistency of positive results was impressive. And the researchers started out sympathetic to open source. Despite the endorsement of open source represented by their findings, they recognized that it's harder to find open source and that all the beneficial customizations take time and money. During a Birds-of-a-Feather session later in the conference, many of us agreed that proprietary solutions are here for quite some time, and can benefit by incorporating open source components.

The study nevertheless remains important and deserves to be released to Congress and the public by the Department of Health and Human Services. There's no point to keeping it under wraps; the researchers are proceeding with phase 2 of the study with independent funding and are sure to release it.

So who uses open source?

It's nice to hear about open source projects (and we had presentations on several at last year's OSCon health care track) but the question on the ground is what it's like to actually put one in place. The implementation story we heard this year was from a team involving Roberts-Hoffman Software and Tolven.

Roberts-Hoffman is an OSCon success story. Last year they received a contract from a small health care provider to complete a huge EHR project in a crazily short amount of time, including such big-ticket requirements as meeting HIPAA requirements. Roberts-Hoffman knew little about open source, but surmised that the customization it permitted would let them achieve their goal. Roberts-Hoffman CEO Vickie Hoffman therefore attended OSCon 2010, where she met a number of participants in the health care track (including me) and settled on Tolven as their provider.

The customer put some bumps in the road to to the open source approach. For instance, they asked with some anxiety whether an open source product would expose their data. Hoffman had a little educating to do.

Another hurdle was finding a vendor to take medication orders. Luckily, Lexicomp was willing to work with a small provider and showed a desire to have an open source solution for providers. Roberts-Hoffman ended up developing a Tolven module using Lexicomp's API and contributing it back to Tolven. This proprietary/open source merger was generally quite successful, although it was extra work providing tests that someone could run without a Lexicomp license.

In addition to meeting what originally seemed an impossible schedule, Tolven allowed an unusual degree of customization through templating, and ensured the system would work with standard medical vocabularies.

Why can't you deliver my data?

After presentations on health information exchanges at OSCON, I started to ruminate about data delivery. My wife and I had some problems with appliances this past Spring and indulged in some purchases of common household items, a gas grill from one company and a washing machine from another. Each offered free delivery. So if low-margin department stores can deliver 100-pound appliances, why can't my doctor deliver my data to a specialist I'm referred to?

The CONNECT Gateway and Direct project hopefully solve that problem. CONNECT is the older solution, with Direct offering an easier-to-implement system that small health care providers will appreciate. Both have the goal of allowing health care providers to exchange patient data with each other, and with other necessary organizations such as public health agencies, in a secure manner.

David Riley, who directed the conversion of CONNECT to an open-source, community-driven project at the Office of the National Coordinator in the Department of Health and Human Services, kicked off OSCon's health care track by describing the latest developments. He had led off last year's health care track with a perspective on CONNECT delivered from his role in government, and he moved smoothly this time into covering the events of the past year as a private developer.

The open-source and community aspects certainly proved their value when a controversy and lawsuit over government contracts threatened to stop development on CONNECT. Although that's all been resolved now, Riley decided in the Spring to leave government and set up an independent non-profit foundation, Alembic, to guide CONNECT. The original developers moved over to Alembic, notably Brian Behlendorf, and a number of new companies and contributors came along. Most of the vendors who had started out on the ONC project stayed with the ONC, and were advised by Riley to do so until Alembic's course was firm.

Lots of foundations handle open source projects (Apache, etc.) but Riley and Behlendorf decided none of them were proper for a government-centric health care project. CONNECT demanded a unique blend of sensitivity to the health care field and experience dealing with government agencies, who have special contract rules and have trouble dealing with communities. For instance, government agencies are tasked by Congress with developing particular solutions in a particular time frame, and cannot cite as an excuse that some developer had to take time off to get a full-time job elsewhere.

Riley knows how to handle the myriad pressures of these projects, and has brought that expertise to Alembic. CONNECT software has been released and further developed under a BSD license as the Aurion project. Now that the ONC is back on track and is making changes of its own, the two projects are trying to heal the fork and are following each other's changes closely. Because Aurion has to handle sensitive personal data deftly, Riley hopes to generalize some of the software and create other projects for handling personal data.

Two Microsoft staff came to OSCon to describe Direct and the open-source .NET libraries implementing it. It turned out that many in the audience were uninformed about Direct (despite an intense outreach effort by the ONC) and showed a good deal of confusion about it. So speakers Vaibhav Bhandari and Ali Emami spent the whole time alloted (and more) explaining Direct, with time for just a couple slides pointing out what the .NET libraries can do.

Part of the problem is that security is broken down into several different functions in ONC's solution. Direct does not help you decide whether to trust the person you're sending data to (you need to establish a trust relationship through a third party that grants certificates) or find out where to send it (you need to know the correspondent's email address or another connection point). But two providers or other health care entities who make an agreement to share data can use Direct to do so over email or other upcoming interfaces.

There was a lot of cynicism among attendees and speakers about whether government efforts, even with excellent protocols and libraries, can get doctors to offer patients and other doctors the necessary access to data. I think the reason I can get a big-box store to deliver an appliance but I can't get my doctor to deliver data is that the big-box store is part of a market, and therefore wants to please the customer. Despite all our talk of free markets in this country, health care is not a market. Instead, it's a grossly subsidized system where no one has choice. And it's not just the patients who suffer. Control is removed from the providers and payers as well.

The problem will be solved when patients start acting like customers and making appropriate demands. If you could say, "I'm not filling out those patient history forms one more time--you just get the information where I'm going," it might have an effect. More practically speaking, let's provide simple tools that let patients store their history on USB keys or some similar medium, so we can walk into a doctor's office and say "Here, load this up and you'll have everything you need."

What about you, now?

Patient control goes beyond data. It's really core to solving our crisis in health care and costs. A lot of sessions at OSCon covered things patients could do to take control of their health and their data, but most of them were assigned to the citizen health track (I mentioned them at the end of my preview article a week ago) and I couldn't attend them because they were concurrent with the health care track.

Eri Gentry delivered an inspiring keynote about her work in the biology start-up BioCurious, Karen Sandler (who had spoken in last year's health care track scared us all with the importance of putting open source software in medical devices, and Fred Trotter gave a brief but riveting summary of the problems in health care. Fred also led a session on the Quantified Self, which was largely a discussion with the audience about ways we could encourage better behavior in ourselves and the public at large.

Guaranteed to cause meaningful change

I've already touched on the importance of changing how most health care institutions treat patients, and how open source can help. David Uhlman (who has written a book for O'Reilly with Fred Trotter) covered the complex topic of meaningful use, a phrase that appeared in the recovery act of 2009 and that drives just about all the change in current U.S. institutions. The term "meaningful use" implies that providers do more than install electronic systems; they use them in ways that benefit the patients, the institutions themselves, and the government agencies that depend on their data and treatments.

But Uhlman pointed out that doctors and health administrators--let alone the vendors of EHRs--focus on the incentive money and seem eager to do the minimum that gets them a payout. This is self-defeating, because as the government will raise the requirements for meaningful use over the years, and will overwhelm quick-and-dirty implementations that fail to solve real problems. Of course, the health providers keep pushing back the more stringent requirements to later years, but they'll have to face the music someday. Perhaps the delay will be good for everyone in the long run, because it will give open source products a chance to demonstrate their value and make inroads where they are desperately needed.

As a crude incentive to install electronic records, meaningful use has been a big success. Before the recover act was passed, 15%-20% of U.S. providers had EHRs. Now the figures is 60% or 70% percent, and by the end of 2012 it will probably be 90%. But it remains to be seen whether doctors use these systems to make better clinical decisions, follow up with patients so they comply with treatments, and eliminate waste.

Uhlman said that technology accounts for about 20% of the solution. The rest is workflow. For instance, every provider should talk to patients on every visit about central health concerns, such as hypertension and smoking. Research has suggested that this will add 30% more time per visit. If it reduces illness and hospital admissions, of course, we'll all end up paying less in taxes and insurance. His slogan: meaningful use is a payout for quality data.

It may be surprising--especially to an OSCon audience--that one of the biggest hurdles to achieving meaningful use is basic computer skills. We're talking here about typing information in correctly, knowing that you need to scroll down to look at all information on the screen, and such like. All the institutions Uhlman visits think they're in fine shape and everybody has the basic skills, but every examination he's done proves that 20%-30% of the staff are novices in computer use. And of course, facilities are loath to spend extra money to develop these skills.

Open source everywhere

Open source has image and marketing problems in the health care field, but solutions are emerging all over the place. Three open source systems right now are certified for meaningful use: ClearHealth (Uhlman's own product), CareVue from MedSphere, and WorldVistA. OpenEMR is likely to join them soon, having completed the testing phase. vxVistA is certified but may depend on some proprietary pieces (the status was unclear during the discussion).

Two other intriguing projects presented at OSCon this year were popHealth and Indivo X. I interviewed architects from Indivo X and popHealth before they came to speak at OSCon. I'll just say here that popHealth has two valuable functions. It helps providers improve quality by providing a simple web interface that makes it easy for them to view and compare their quality measures (for instance, whether they offered appropriate treatment for overweight patients). Additionally, popHealth saves a huge amount of tedious manual effort by letting them automatically generate reports about these measures for government agencies. Indivo fills the highly valued space of personal health records. It is highly modular, permitting new data sources and apps to be added; in fact, speaker Daniel Haas wants it to be an "app store" for medical applications. Both projects use modern languages, frameworks, and databases, facilitating adoption and use.

Other health care track sessions

An excellent and stimulating track was rounded out with several other talks.

Shahid Shah delivered a talk on connecting medical devices to electronic record systems. He adroitly showed how the data collected from these devices is the most timely and accurate data we can get (better than direct reports from patients or doctors, and faster than labs), but we currently let it slip away from us. He also went over standard pieces of the open source stacks that facilitate the connection of devices, talked a bit about regulations, and discussed the role of routine engineering practices such as risk assessments and simulations.

Continuing on the quality theme, David Richards mentioned some lessons he learned designing a ways clinical decision support system. It's a demanding discipline. Accuracy is critical, but results must be available quickly so the doctor can use them to make decisions during the patient visit. Furthermore, the suggestions returned must be clear and precise.

Charlie Quinn talked about the collection of genetic information to achieve earlier diagnoses of serious conditions. I could not attend his talk because I was needed at another last-minute meeting, but I sat down for a while with him later.

The motto at his Benaroya Research Institute is to have diagnosis be more science, less art. With three drops of blood, they can do a range of tests on patients suspected of having particular health conditions. Genomic information in the blood can tell a lot about health, because blood contains viruses and other genomic material besides the patient's own genes.

Tests can compare the patients to each other and to a healthy population, narrowing down comparisons by age, race, and other demographics. As an example, the institute took samples before a vaccine was administered, and then at several frequent intervals in the month afterward. They could tell when the vaccine had the most powerful effect on the body.

The open source connection here is the institute's desire to share data among multiple institutions so that more patients can be compared and more correlations can be made. Quinn said it's hard to get institutions to open up their data.

All in all, I was energized by the health care track this year, and really impressed with the knowledge and commitment of the people I met. Audience questions were well-informed and contributed a lot to the presentations. OSCon shows that open source health care, although it hasn't broken into the mainstream yet, already inspires a passionate and highly competent community.

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