Learning from my N of 1 by Mark Drangsholt

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From The Quantified Self Public Health Symposium

Mark Drangsholt is a clinician scientist with a PhD in epidemiology, but the story he tells in this short talk is about deciphering two different serious medical conditions through tracking and thinking about his own personal data.

“My main story today is not about my professional life. A key event happened here in San Diego about 13 years ago. I was at a research conference, and while sitting in the back of an auditorium just like this my heart rhythm went completely haywire. The thing that was most surprising was that instead of waving my arms and asking for help, I just slumped in my chair and greyed out, thinking this was the end. I thought I was dying.”

In the years since, Mark has developed pioneering methods of self-investigation to solve his own health issues, methods that he describes here with an explanation of how they drive more widespread health discovery.

Watch Mark’s talk on Medium.

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Asking Myself 10,000 Questions by Brian Levine

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From The Quantified Self Public Health Symposium

How do you study yourself when you’re not looking? Brian Levine is the co-founder of Tap2, the creator of younlocked, a unique self-assessment tool that helps individuals collect self-report data by asking questions during the phone unlocking process. By answering almost 10,000 questions during a six-month period Brian was able to find out: “Why am I so tired, and why can’t I be in a better mood?” By connecting self-assessment to the phone unlocking gesture, which is performed many times a day, Brian created a novel form of self-observation. In this short talk Brian shares some details about his rich self-collected data set that, as well as a method that, if widely adopted, could be the foundation for many new personal and public health discoveries.

Watch Brian’s video on Medium.

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A Public Infrastructure For Data Access

Smarr2 (1)Larry Smarr’s major contributions to scientific progress are well known. A physicist and the founding director of the National Center for Supercomputing Applications (NCSA), he helped bring the power of computing to scientific research at a time when computers will still highly specialized instruments. Today he is the Director of the California Institute for Telecommunications and Information Technology (Calit2), one of the most innovative research institutes in the world. He’s also an avid self-tracker, using his own data to correctly self-diagnose the onset of Crohn’s disease. In preparation for our upcoming Quantified Self Public Health Symposium I asked Larry about his idea for a large scale, non-commercial, broadly accessible infrastructure for improving access to self-collected data for both personal and public benefit.

Gary Wolf: What’s the role of the public health sector and of the academic research community in a world where individuals and consumer-oriented tech companies are taking on increasingly complex questions of personal and population health?

Larry Smarr: The fundamental role is bridging the gap between N=1 and N=a lot. Any time in the last 30 years when I’ve seen a technical innovation that mattered, like a software tool, the first approaches aren’t ready for prime time. They are not developed with professional-level software engineering, version controls, documentation and all that. Similarly, scaling up of biomedical observations made by N=1 quantified individuals is going to require the professional methodologies of the public health sector.

GW: Can this be left to industry?

LS: Not entirely, although startups are doing a fabulous job of getting tracking tools into the hands of tens of millions of individuals. The problem is how to do research on the data produced by that broad population. Too often these days I see  researchers from the university going to tracking companies and asking for access to the company’s raw data feeds, for instance to heart rate or exercise time series, and the company says no. They will give you the weekly or daily average, but you can’t get to the raw data. If you go to them and say, I’ve got this really great innovation that can be used to understand this data, more often than not they decline. They have an installed base and market share to protect, which naturally tends to make them conservative. I think there is a real opening for companies to make this anonymized broad population data available to academic researchers. That’s when a raft of scientific discoveries will be made from the quantified population.

GW: Those are the consumer fitness companies, but what about the healthcare IT world?

LS: Again there is a disconnect between the consumer fitness cloud-based apps for millions of individuals and the electronic health records in your healthcare provider. If you’re a doctor in a medical office, unlike a data science researcher, you don’t want all this data. What you want to know is: did my patient do 1000 steps or 10,000 steps today, did you get aerobic exercise or not, are they getting enough sleep? So it’s not like you need a vast dumping place inside electronic health records.  Again, I think pilot experiments are the way to get started.

GW: You’re arguing that the incentives aren’t there.

LS: These are currently major structural barriers. Who is going to work on the bridging we are discussing? There aren’t incentives for the commercial tracking companies to work on it. Neither are there incentives for the electronic medical record companies to work on it. NIH isn’t going to support bridging between commercial companies.  It falls between the stools. You need to have the research community, and health care IT experts, the commercial tracking companies, and the individual self-trackers all come together and collaborate.

GW: You envision some kind of technical system so that individuals and health care providers and researchers could all benefit from access to data. What does your experience tell you about how long this would take to have a working prototype that would be practically useful?

LS: It’s a three-to-five year project. I think if a major funder did a call for proposals requiring a health care provider, university research community and the self-tracking community to come together a prototype a solution, I think they would get some very interesting proposals.

GW: In a talk you gave in 2011, you said “science is not enough.” You pointed out that we’ve known the link between smoking and cancer for over half a century, and yet global cigarette consumption has tripled during this time. So we have all this possibility for new discoveries with self-tracking data, but how is that going to help make people healthier?

LS: Yes, just knowledge of what causes negative impacts on health is not enough. My former UC San Diego colleague Naomi Oreskes documents how economic interests slowed down the logical social reaction to smoking health threats and climate change in her Merchants of Doubt: How a Handful of Scientists Obscured the Truth on Issues from Tobacco Smoke to Global Warming (2010). We are seeing similar delaying and disinformation tactics in the obesity/diabetes epidemic, which has been building for four decades. It is sobering to me to see someone as politically skilled as New York City mayor Bloomberg defeated in his efforts to ban jumbo sugary drinks. My best guess is that we face a multi-decadal battle, just as we have had with tobacco and climate change, to get our society to move to healthy eating and drinking. The bright spots are subcultures of healthy living, often empowered by tracking and social media, that are developing across the country.  My hope is that these will spread and scale over the next decade.

GW: It seems you are also pointing toward activism, since that’s been so important with smoking.

LS: Activism is essential given the enormous power of the entrenched economic interests. Activism can lead to regulatory reform, which over time can make huge social changes.  For example, when I grew up in the 1950s and early 60s my father didn’t smoke, but he was embarrassed that you had to have ashtrays in your house, because he said you couldn’t tell people not to smoke in your own home. Socially, you just couldn’t. About that time the Surgeon General’s report on smoking was published. Fifty years later, huge chunks of society are smoke-free, such as all the University of California campuses, restaurants, and large social gatherings. Just think of what an enormous shift that has been! We are beginning to see similar activism in getting pension fund investors to boycott carbon fuel companies in order to slow down climate change. So can we imagine a boycott against sweetened beverages and high glycemic prepared foods? I believe that there is a huge role for health-related individual and organized activism in the near future.

GW: At the last Quantified Self Public Health meeting, you suggested that this emerging field needs a new kind of journal where individuals can report their discoveries. In light of the big challenges you’ve been describing, challenges that can’t be solved by academic and research publication alone, what kind of contribution could a new journal make?

LS: Let’s go back to the issue of scaling we discussed. Imagine the journal articles are fairly short, describing how the data was generated, but the back end is a publicly available cloud of data so that you could begin growing a large dataset of N=1 projects. Then the research community could pick up on the ideas coming out of the Quantified Self community, explore the data, and take it further. That’s how things grow.

GW: You want to be on the editorial board?

LS: No, I want to submit a paper!

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Solving the Right Problem by Susannah Fox and Don Norman

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From the Quantified Self Public Health Symposium

The cognitive scientist Don Norman is one of the world’s most influential design theorists. His best-selling book, The Design of Everyday Things, has been in print for twenty-five years and is widely recognized as a classic. He is currently the director of The Design Lab at University of California, San Diego.

Here he talks with Susannah Fox, who was at the time of their conversation an entrepreneur-in-residence at the Robert Wood Johnson Foundation. (Today Susannah is the CTO at the US Department of Health And Human Services.) Susannah begins by asking Don about his idea that the first job of design is the solve the right problem. How do you know the problem you’ve chosen is the right one?

“In Human-Centered Design,” Don answers, “when we’re asked to solve the problem the rule is no, don’t solve the problem. Ask, why is that the problem? Why do you need this? What is this problem about?”

Watch Susannah and Don’s talk on Medium.

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What We Are Reading

Articles

The Beacon Experiments: Low-Energy Bluetooth Devices in Action by Chaise Hocking. There is a lot of interest in using micro-location to support QS projects, with much excitement focused on Bluetooth beacons as a possible solution. If you’ve been curious about how well the fairly well known Estimote and Kontakt beacons work for estimating proximity, this post is for you. ‑Gary

Do-It-Yourself Medical Devices — Technology and Empowerment in American Health Care by Jeremy A. Greene. DIY healthcare technology has existed a lot longer than the devices designed to pair with your smartphone, but the “it” in DIY, as well as whom “yourself” is directed towards, has changed significantly over time. ‑Steven

Boundary Negotiating Artifacts in Personal Informatics: Patient-Provider Collaboration with Patient-Generated Data by Chia-Fang Chung et al. This sensitive research paper explores how self-collected data can be used to support collaboration between people seeking health care and their care providers. Based on surveys and interviews, Chung and her co-authors offer a detailed analytical framework for understanding common tensions and misunderstandings, and give extremely thoughtful suggestions for designers. ‑Gary

‘Superman Memory Crystal’ Could Store Data for 13.8 Billion Years by Stephanie Pappas. It’s probably foolish to get excited by a technology that may never escape the research facility, but I’m excited by the idea anyhow. The challenge of keeping data from degrading is a big one. Libraries burn down. Magnetic tapes disintegrate. Hard drives die suddenly. The idea of storing your data on a glass disc is poetically appealing, but I am surprised to learn of it’s practicality in terms of stability and capacity.‑Steven

The Most Famous Mice in the World Right Now by Steve Hamley. I’ve been following the slow transformation of nutritional science from anti-fat to anti-carb since reading Gary Taubes cover story for the New York Times: “What If It’s All Been A Big Fat Lie?” This week there was a minor chapter in which many media reports used some work by a New Zealand scientist purporting to show that high fat, low carb diets could be bad for your glycemic control after all. The above story by Steve Hamley is the best debunking. ‑Gary

Ann Douglas Details Her Hi-tech Weight Loss Journey by Lauren Pelley. Ann Douglas, an author of books on parenting and pregnancy, lost 135 pounds over two years. She didn’t have one killer device or app, but used a suite of tools that contributed in one way or another. “I had given up all hope of ever losing all this weight,” she says. “If you’re sitting there despairing, wondering how you’re ever going to do anything about your weight problem — I was there too.” ‑Steven

Show&Tell

Using Heart Rate Variability to Analyze Stress in Conversation by Paul LaFontaine. “Vapor lock” is Paul’s term for that feeling when you are trying to retrieve something from memory in conversation, but because of the stress of the situation (especially if it is with a boss), you lock up and your recall fails. To better understand this phenomenon and learn how to prevent it, Paul measured his heart rate variability during 154 conversations with bosses and co-workers and discovered that the biggest cause of his “vapor lock” was not what he expected at all. ‑Steven

17 Years of Location Tracking by Stephen Cartwright. Steven has been tracking his latitude, longitude and elevation every hour since 1999. In this talk, Stephen shows how seventeen years of location tracking has given him a wealth of data to explore in the form of three-dimensional data visualization sculptures. He has even brought some of these to QS conferences. They are amazing to behold in person. ‑Steven 

Data Visualizations

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Marrying Age: This is when Americans get married by Nathan Yau. This interactive visualization looks at the average marrying age for different demographics. You can’t see the trends over time, but it is interesting, though not wholly surprising, to see smoother distributions for demographics that tend to have more stabile economic situations, like college graduates. (Though I’m not sure if that has more to do with the relative number of people in each group.) ‑Steven

Forget_me_nots

Forget me nots by Lam Thuy Vo. This explores the relationship between a woman and her archive of email exchanges with exes. This visualization above is fairly standard, but the others in the piece are more like tone poems. Appropriate, considering that dives into your archive can leave you swirling in unleashed emotion (Speaking from personal experience here. You would be surprised by how much you can relive your life by looking at old bank statements). ‑Steven

Projects

Danielle by Anthony Cerniello. This is a video of a computer generated face that ages over the course of four minutes. The length is interesting in that you can tell that change is occurring, yet it is happening slow enough that it’s hard to see exactly what is changing moment to moment. ‑Steven

Thanks to Ernesto for sending a link our way. If you find an interesting article you’d like to recommend, email labs@quantifiedself.com. If you want to get these automatically in your inbox, you can subscribe here.

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Stephen Cartwright: 17 Years of Location Tracking

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“I started [tracking location] because I’m interested in all these invisible systems that we are immersed in.”

Stephen Cartwright has been tracking his latitude, longitude and elevation every hour since 1999. Even though the GPS in smartphones has made location tracking automatic, Stephen finds that he gets more reliable data from manually logging his location, of which he has almost 150,000 entries.

In this talk, Steven shows how seventeen years of location tracking has given him a wealth of data to explore in the form of three-dimensional data visualization sculptures. He has even brought some of these to QS conferences. They are amazing to behold in person.

While his visualizations show where he’s been, he says that it’s the negative space that can be more interesting, prompting the question, “Where do I need to go? What do I need to see?”

Other location tracking talks that we’ve featured include Jamie Aspinall‘s adventures in the UK, Robbie MacDonell on logging his transportation, and Alastair Tse on walking around Manhattan. We’ve also featured some great location-related visualizations from Bob Troia, Aaron Parecki, Eric Jain, and Tom McWright.  If you have some location data from Moves, we’ve also written a guide on mapping it.

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Opening Up Access by Madeleine Ball

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From the Quantified Self Public Health Symposium

The Open Humans project is one of the most radical data access efforts underway today, both exemplifying new modes of access and also revealing, by contrast with conventional research and data protection systems, how much work remains to be done in our field. Madeleine Ball, co-founder of Open Humans and Director of Research for the Harvard Personal Genomes Project explains that the main premise of Open Humans is centered on the idea that researchers should freely share data from their studies back to the participants; and that participants should be able to use a well-designed, convenient, open platform to donate their data to science without de-identification. Because Open Humans is not premised on anonymized data, it is driving toward a new relationship between participants and scientists in which with both sides have names, and must communicate, negotiate, and share responsibility. “It’s more interesting than simply allowing broad sharing of identifiable data, because it enables ongoing connections around that data so new researchers can work with that person.”

Watch Madeleine’s video on Medium.

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Paul LaFontaine: Using Heart Rate Variability to Analyze Stress in Conversation

Paul LaFontaine is the organizer for the Denver QS meetup and has given many fabulous talks on heart rate variability. If you are not familiar with HRV, you can think of it as the measurement of your nervous system’s reaction to a perceived threat.

“Vapor lock” is Paul’s term for that feeling when you are trying to retrieve something from memory in a conversation, but because of the stress of the situation (especially if it is with a boss), you lock up as your recall fails. To better understand this phenomenon and learn how to prevent it, Paul measured his HRV during 154 conversations with bosses and co-workers.

Because “vapor lock” is not a standard measurement, Paul shows the criteria he used to identify these moments in his data. His analysis revealed a likely cause for what locks him up, but it was not what he expected and it changed his approach to meetings and conversations at work.

If you want to watch more talks about heart rate variability, Randy Sargent showed us what his HRV looks like through a spectogram. Matt Dobson talked about using it, along with other measurements, as a way to passively detect emotions. And I used a HRV device to track my stress at work.

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Make Advanced Self-Measurement More Accessible by Bob Evans

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From the Quantified Self Public Health Symposium

Why can’t everybody use advanced analytics to understand themselves? Bob Evans is the lead developer of PACO, an open source tool for supporting both individual discovery and large scale participatory research. Bob originally designed PACO as a personal project to get a better handle on how he felt at work by querying himself at random times during the day, a method known as “experience sampling.” PACO has grown and developed over time into a platform for experimentation used in over one thousand projects designed by researchers, companies, and individuals. Here, Bob shares some of his lessons about how and where the individual quest for self-discovery connects with large scale research. “The goal is to make it easier for researchers and individuals to experience their own lives, be scientists, and make their own experiments at will. The long tail of questions that people want to ask is very, very long.”

Watch Bob’s video on Medium.

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What We Are Reading

WWAR

Articles

This Scientist Is Turning Every Element In the Periodic Table Into Music by Jennifer Ouellette. We have seen Randy Sargent analyze his heart rate variability with a spectogram, a tool normally used for visualizing sound. This project is perhaps the inverse, turning the molecular structure of elements into audible tones. Surprisingly, “sonification” is becoming a useful analytical tool in materials science. Here’s the sound of silicon. -Steven

Building a Better Tracker: Older Consumers Weigh In On Activity and Sleep Monitoring Devices. (PDF) This study by the Georgia Home Lab that explored the value of self-tracking for people over 50. The researchers enrolled 92 participants and set them up with seven different activity trackers, then followed them for a six week period. While participants tended to believe that self-tracking could be valuable, most of them did not learn much of interest, and reason is telling: the lessons provided by the trackers were too general. “Participants who did not find the devices to be useful said that they wanted more data related to their specific conditions and that they wanted notification if the data indicated something of concern. More sensors relevant to health conditions was the most common suggestion for improvement.” -Gary

If You Want Life Insurance, Think Twice Before Getting A Genetic Test by Christina Farr and Cops are asking Ancestry.com and 23andMe for their customers’ DNA by Kashmir Hill. I’m filing both of these stories under “Ways your data can be used against you.” -Steven 

BMI Is A Terrible Measure Of Health: But we keep using it anyway by Katherine Hobson. It’s not news for me that BMI is a terrible metric. But if BMI is not a good proxy for health, what metric is out there that is better and as easy to measure? This article looks at mid-section measurements as a candidate. -Steven

Your Letters Helped Challenger Shuttle Engineer Shed 30 Years Of Guilt by Howard Berkes. This is a short piece, but it touches on themes of data-based arguments, courage, guilt, and self-forgiveness. -Steven

Show&Tell

Know Thy Cycle, Know Thyself by Ilyse Magy. Using the Fertility Awareness Method and Kindara, Ilyse diagnosed a previously unnoticed vitamin deficiency that had a huge effect on her wellbeing, as well as gained other important insights into cyclical dimensions of her health and wellbeing. ”Once I started charting, I was pretty amazed by what I was learning, but also kind of mad that no one had ever told me this stuff before.” -Gary

Why I Weighed My Whiskers by John Cousins. Inspired by an anecdote about a man’s beard growth while working on a remote island, Jon explores whether there is a relationship between his mood and facial hair. Yes, you read that right. -Steven

Stoic Self-Tracking by Alberto Frigo. One of the most consistently interesting chronicles of a self-tracking life is Morris Villarroel’s shadow of the stream, where he writes on his ongoing, multi-year life-logging projects, about which he’s given several excellent conference talks. But this week Morris turned over his blog to another deeply reflective self-tracker, the artist Alberto Frigo, whose self-tracking practice includes photographing everything he picks up in his right hand. In this post, Alberto revives an old word – operosity – in describing the worthy laboriousness of self-care. -Gary

Excerpt from Alberto’s piece:

On a bus from the Venice airport to the mountains where I am now restoring an abandoned barn to deposit my life-work, I was reading Seneca. I was reading it for different reasons; in the first place, it was what an old professor of mine  quoted when he decided to give up his inspiring career and retire to a small barn near the town the bus was passing. Secondly, reading Seneca was like a counter-reaction to all the Anglo-Saxon stuff one is forced to refer to in today’s humanities. Thirdly, Seneca has often been quite superficially pointed out as one of the first persons to quantify himself.

Basis Breakdown. This an interesting take on a weekly journal, combining Basis Peak stats with daily reflections. -Steven

Data Visualizations

 

LifeOfAmericans

A Day in the Life of Americans by Nathan Yau. This visualization is a timelapse showing how Americans spend their day, based on the Bureau of Labor’s American Time Use Study. It would like to see a similar visualization, but for a single person with each dot representing a different date. -Steven

 

Codeology

Codeology. This project takes code from github and represents them with an odd combination of 3D and ASCII text to create organic seeming shapes. After looking at a couple dozen of these, I wanted to see the shapes interact with each other. Arena fight, perhaps? -Steven

 

Shifts-in-power-in-the-Supreme-Court

The Potential for the Most Liberal Supreme Court in Decades by Alicia Parlapiano and Margo Sanger-Katz. This excellent visualization uses Martin-Quinn scores to show the ideological leanings of Supreme Court justices’ rulings by year. More importantly, by highlighting the relative liberal or conservatism of the justice who sits in the ideological median, it shows how the character of the court has shifted through the years. -Steven

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