Topic Archives: What We’re Reading
Who Owns Medical Records: 50 State Comparison by George Washington University’s Hirsh Health Law and Policy Program. You’ll never guess how many states have laws that give patients ownership rights for their medical records. Spoiler: ONE.
Want to Improve Health? Help People Use and Share Their Data by Risa Lavizzo-Mourey. Dr. Lavizzo-Mourey, president and CEO of the Robert Wood Johnson Foundation, shares her thoughts about how access to and sharing data can bring about a Culture of Health:
I believe that, fundamentally, data is all about helping people find new opportunities to pursue optimal health and participate in their own care. That means promoting ways to get, use, and share information about themselves easily and securely.
Technology That Prods You to Take Action, Not Just Collect Data by Natasha Singer. A nice article here that includes some great insights from our friend and community contributor, Natasha Dow Schüll. Are devices being “dumbed down” or are we when we “cede [our] free will to machine algorithms”? Only time will tell.
Can healthy people benefit from health apps? by Iltifat Husain & Des Spence. In this debate, Iltifat Husain and Des Spence discuss different types of health tools, applications, and devices being used by healthy individuals. Do they impact our health for the better? These two physicians duke it out through spoken and written word.
Excavating Old-School Self-Tracking Tools by Jamie Todd Rubin. A short but interesting thought experiment here by Jamie. What would happen if we analyzed the vast troves of “soft” data found in the diaries and journals? What could we find out about our past, our history?
How We Are Measuring Happiness at Whitesmith by Daniel Flopes. Another interesting example of using the workplace team communication tool, Slack, to gauge and collect information about the emotional wellbeing of employees.
Impact of music streaming on my listening habits by Maciej Konieczny. Maciej switched to streaming music in 2013, and it completely changed how he experienced music. In this great post Maciej he describes how exploring his music listening data (from Last.fm, of course), he was able to see just how his listening habits were impacted.
Quantified Self About Town by Changyeon Lee. This visualization is part of a project by Changyeon to map artificial light in New York City. Above you see a data visualization of artificial light data around the NYU Tisch Building
My year in calories/weight.Data exported from MyFitnesspal by reddit user qwerty2020.
In world of health data, enemies may become friends
Why should patients have the right to a copy of their imaging data?
WHO: Share Trial Data
California Launches Initiative to Advance Precision Medicine
From the Forum
Body Analyzing Scales – the maths?
Sleep Apnea Treatments
Central repository for QS dataComparing Steps with BodyMedia FIT and Fitbit Charge HR
How to calculate the impact of activities on pain levels
I’m filling in for Ernesto. I hope you enjoy this week’s list of articles and visualizations!
Don’t Relax: Uncomfortability Is The New Convenience by Adele Peters. This article looks at some products where a tolerable level of inconvenience is built into the design that prompts healthy actions or occasions for reflection.
Using Biometric Data to Make Simple Objects Come to Life by Liz Stinson. A whimsical project on display at Dublin Science Gallery’s Life Logging exhibition uses household objects to reflect and amplify the signals from your body.
The High Price of Precision Healthcare by Joseph Guinto. This is a fairly in-depth article on the relationship between drug and insurance companies and what happens when drug companies are given incentives for developing medicine for smaller populations. Not a breezy read by any means, but important for understanding the unintended consequences of changes made to the American healthcare system.
If Algorithms Know All, How Much Should Humans Help? by Steve Lohr. An exploration of a quandary that arises from machine learning methods. At what point do the automatic, self-learning processes mature to the point where any human intervention for correction is seen as injecting sullying “human bias.”
Networking the Coffee Maker by David Taylor. A fun, little project using an ElectricImp micro-controller to track when the office coffee pot was brewing. The author helpfully includes his code.
Using 750words.com and self-quantification by Morris Villarroel. Morris has been using 750words.com for the past three months and reflects on his previous attempts to use the service consistently and how he uses it now.
My brain on electricity: a 130 day tDCS experiment. This is a fascinating self-experiment where the author tries different tDCS montages while doing thirty minutes of dual n-back training.
My Path to Sobriety by ERAU. From Reddit, the poster shares the data from an effort to reduce one’s alcohol consumption.
From the Forum
The validity of consumer-level, activity monitors in healthy adults worn in free- living conditions: a cross-sectional study by Ty Ferguson, Alex Rowland, Tim Olds, and Carol Maher. A very interesting research study examining the accuracy of different consumer activity trackers when compared to “research-grade devices.” Free living only lasted a few days, but it’s a great start to what I hope to see more of in the research – actual use out in the wild.
The Healing Power of Your Own Medical Records by Steve Lohr. Steven Keating has a brain tumor. He also has over 70GB of his medical data, much of which is open and available for anyone to peruse. Is he showing us our future? One can hope.
Mr. Keating has no doubts. “Data can heal,” he said. “There is a huge healing power to patients understanding and seeing the effects of treatments and medications.”
Why the DIY part of OpenAPS is important by Dana Lewis. Always great to read Dana’s thoughts on the ever evolving ecosystem of data and data-systems for people living with diabetes.
Why I Don’t Worry About a Super AI by Kevin Kelly. I, for one, am super excited for advancements in artificial intelligence. There are some that aren’t that excited. In this short post our QS co-founder, Kevin Kelly, lays out four reasons why he, and maybe why all of us, shouldn’t be fearful of AI now or into the future.
Responding to Mark Cuban: More is not always better by Aaron Carroll. Earlier this week Mark Cuban started a bit of an kerfuffle by tweeting out, “1) If you can afford to have your blood tested for everything available, do it quarterly so you have a baseline of your own personal health.” What followed, and is still ongoing, is a great discussion about the usefulness of longitudinal medical testing. I’m not sure I agree with the argument made here in this piece, but interesting nonetheless.
My Quantified Email Self Experiment: A failure by Paul Ford. Paul takes a look at his over 450,000 email messages dating back 18 years. He find out a lot, but states that he doesn’t learn anything. I disagree, but then again, I’m not Paul. Still fascinating regardless of the outcome.
Filling up your productivity graph by Belle Beth Cooper. Want to understand your productivity, but not sure where to start? This is a great post by Belle about how she uses Exist and RescueTime to track and understand her productive time.
2014: An Interactive Year In New Music by Eric Boam. We’ve featured some of Eric’s visualization work here before, but this one just blew me away. So interesting to see visualization of personal data, in this case music listening information, turned into something touchable and engaging.
“Women and Children First” by Alice Corona. A fascinating deep data dive into the Titanic disaster. Was the common refrain, “Women and children first!” followed? Read on to find out.
HHS Expands Its Approach to Making Research Results Freely Available For the Public
European Food Safety Authority (EFSA) Grants Public Access to Data through Scientific “Data Warehouse”
FDA ‘Taking a Very Light Touch’ on Regulating the Apple Watch
Selling your right of privacy at $5 a pop
From the Forum
Enjoy this week’s list!
The inside story of how Apple’s new medical research platform was born by Daneila Hernandez. I know we’ve been talking a lot about ResearchKit lately, but I had to add this fantastic piece on Stephen Friend’s journey that lead him to help bring it out of Apple’s lab and onto our iPhones. Of particular interest was this sentence from a FOIA request on Apple’s meeting with the FDA in 2013:
“Apple sees mobile technology platforms as an opportunity for people to learn more about themselves. “
Your Data Is Not Your Life Story by Michael Humphrey. An interesting take on the influence of machines and algorithms on our ability to understand and tell the stories of our lives.
Data Privacy in a Wearable World by Gawain Morrison. Gawain lists five steps for companies to consider as they beocome the gatekeepers of our personal data. My favorite: “Set up an ethical body”
DJ Patil Talks Nerd to Us by Andrew Flowers. You may know DJ as the gentleman who coined the term “data scientist” or from his groundbreaking work at LinkedIn, or maybe even his new position as the deputy chief technology officer for data policy and chief data scientist at the White House. Regardless, this interview sheds some light on his new role and how he thinks about the power of data at the national level.
Wireless Sensors Help Scientists Map Staph Spread Inside Hospital by Scott Hensley. A great piece on a new research article the described a new digital epidemiology method used to track individuals and infection in a hospital. One can’t help but wonder about the future of this type of system for understanding healthcare interactions now that we have low-cost iBeacon, NFC, and RF technology embedded into our phones.
Sensored City by Creative Commons. Together with the Robert Wood Johnson Foundation and the City of Louisville, CC Science is creating an open-source project to map and visualize environmental data. So great to see this work getting out there.
Reflections on my ongoing diet and fitness project by Shannon Conners. Again Shannon wows us with her beautiful and thoughtful explanation on how tracking and visualizing her data has set her on a path to a healthy weight.
“I have now collected enough free-living data in my own n=1 study to quantify what works for me to lose weight and maintain in a healthy range for me — an understanding that largely eluded me up to this point in my life. Not surprisingly, I have converged on the same deficit strategy commonly employed in weight loss studies that treat people like caged rats, closely quantifying their intake and activity to prove that negative calorie balance is the critical factor that causes weight loss. I’m truly grateful that I didn’t need to live in a cage to learn what I have over the past few years. In many ways, learning what I have from my data has helped set me free.”
Tracking Joy at Work by Joe Nelson. Joe and his coworkers use Slack to communicate at work. He was wondering why sometimes things just weren’t working right so he created a tool to randomly ask himself and his coworkers how he they feel. Results are then displayed anonymously on a dashboard. So cool.
Dear Data by Giorgia Lupi and Stefanie Posavec. Two friends track one topic each week and send each other postcards with hand-drawn visualizations based on the data. Absolutely beautiful work.
Air Transformed By Stafanie Posavec with Miriam Quick. Two wearable data objects based on open air quality data: Touching Air (a necklace) and Seeing Air (glasses).
Laurie Frick – American Canvas. A great interview with our friend and data artist, Laurie Frick. Make sure to watch through to the end.
It’s Not Just the Watch: Apple Also Helping Cancer Patients
Americans Believe Personal Medical Data Should Be Openly Shared with Their Health Care Providers
What should we do about re-identification? A precautionary approach to big data privacy
Ernesto is in sunny Austin for SXSW, so I’m filling in to gather this week’s articles and links for your reading pleasure.
Apple ResearchKit concerns, potential, analysis by MobiHealthNews. ResearchKit was a big surprise coming out of Apple’s Special Event this week. It was quite difficult to select just one representative article about the ensuing conversation, so this round-up serves nicely.
#WhatIfResearchKit: What if Research Kit actually, truly, worked… by Christopher Snider. Okay, I failed to keep to one article on ResearchKit. This post chronicles a series of Twitter conversations on the question: if ResearchKit does work, what are the possibilities?
The Electric Mood-Control Acid Test by Kevin Bullis. Thync is a sort of evolved version of a transcranial direct current stimulation (TDCS) device. A technology with a lot of potential and controversy, this article explores why the brain-enhancing effects of the TDCS only work for some people. By the way, if you are a fan of Philip K. Dick, Thync may remind you of the mood organ that was in Do Androids Dream of Electric Sheep?
Automated Learning by Nichole Dobo. Some school classrooms are experimenting with ”Blended learning”, a method of combining classroom teachers and computer-assisted lessons. A detail that stuck with me is the description of three large displays that show where each student is supposed to go that day, based on the results of the previous day’s lesson.
The Mouse Trap: Can One Lab Animal Cure Every Disease? by Daniel Engber. An in-depth how science’s predominant use of lab mice could be limiting our knowledge of disease. Of relevance to self-trackers because many models of optimal health are in part based on mouse studies.
Analyzing a Year of My Sleep Tracking Data by Bob Troia. This is a superb exploration of Bob’s sleep data from 2014 as collected by his Basis watch.
Notes on 416 Days of Treadmill Desk Usage by Neal Stephenson. The author of Snow Crash and The Cryptonomicon is a long time user of a treadmill desk, but when he began having pain in his left leg, he had to reevaluate how he used his favored tool.
Qualities of #QuantifiedSelf by Christina Lidwin. A fascinating analysis of the #quantifiedself hashtag.
First medical apps built with Apple’s ResearchKit won’t share data for commercial gain by Fred O’Connor
Talking Next-Gen Diabetes Tools with Dexcom Leaders by Mike Hoskins
From the Forum
Mood Tracking Methods?
Howto track laptop uptime
CCD or CCR conversion tools?
What gets measured, gets managed – Quantified Self in the workplace
Best ECG/EKG Tool for Exercise
Best iOS app to track water/coffee/alcohol intake?
This Week on QuantifiedSelf.com
QS15 Sponsor Highlight: RescueTime
Quantified Self and Apple’s ResearchKit
Better by Default: An Access Conversation with John Wilbanks
QS15 Conference Preview: Jamie Williams on Tracking My Days
Quantified Self Styles
Lastly, I’ll leave you with a lovely little comic with a message that many self-trackers can relate to.
The Secret by Grant Snider
We hope you enjoy this week’s selection of links, show&tell posts, and visualizations!
Hacking Your Brain by The Economist. Increasing performance and cognitive functioning, reducing depression, improving memory – if you could use a simple tool to get all these done, would you? What if that device was delivering electrical current to your brain? That’s the promise of transcranial direct current stimulation.
Talking Next-Gen Diabetes Tools with Dexcom Leaders by Mike Hoskins. Wonderful interview here with Terry Gregg (chairman) and Kevin Sayer (CEO) of Dexcom. Particular focus is given to their reaction and ideas regarding the open source Nightscout project.
Scientists threatened by demands to share data by Victoria Schelsinger. An older article (2013) about the shift towards open data and data sharing in academic science and it’s potential impact and possible pitfalls.
”’I think the public thinks that we’re all learning from everyone else’s work. That’s not true, and furthermore, it’s not true in ways that are even worse than you might think.’” – Heather Piwowar
Changing Representation of Self-Tracking by Deborah Lupton. It’s always great to hear that Deborah has released new writing. Her thoughtful analysis about self-tracking, data as culture, and data as object is consistently fantastic. Great addition to her growing body of work here.
Why Pets Are the Future of Fitness Wearables by Annie Lowrey. An interesting take on how the rise of tracking tools for pets may impact pet owners. Reminds me of research conducted by my old colleagues at San Diego State University: Physical activity, weight status, and neighborhood characteristics of dog walkers (Spoiler: Having a dog is associated with being more physically avtive.)
This guy is the Mark Zuckerberg of open-source genetics by Daniela Hernandez. A few weeks ago we highlighted an article by Daniela that focused on the fantastic openSNP project. She’s back with a profile of one of the founders, Bastian Greshake. (Full disclosure: I am openSNP member #610.)
Personal Sleep Monitors: Do They Work? by Christopher Winter. Superb experiment here to try and understand the accuracy of different sleep trackers.
What I’ve learned after 10 years of quantifying myself by Maxim Kotin. The title says is all.
A History of Checkins: Facebook Checkin Stats by Octavian Logigan. Octavian breaks down three years of his location checkin history and describes what he learned through examining seasonal trends, category breakdowns, and travel patterns.
I love the sleep tracker, so I can quantify this kind of information! (I have a 2yo and a 5yo….) by reddit user EclecticBlue. Fun visualization here of Fitbit sleep data. Also, great comments in the thread.
Locals & Tourists by Mapbox & Eric Fischer. I could spend hours exploring this interactive map of tweet locations by “tourists” and “locals”. (Special thanks to Beau Gunderson for point out that Eric also did a similar project with geotagged Flickr photos)
The Impact of Weather on Human Activity by Paul Veugen. The team at Human “1.9M activities in Boston & NYC to see the impact of weather on Human activity.” Make sure to click through for the full visualization.
FCC & FDA moving connected health forward by establishing wireless medical test beds
Nike+ Running Expand Global Partnerships
Will Our Fitness Data Be Used Against Us?
As the “quantified self” industry explodes, who will control the data — us or them?
This Week on QuantifiedSelf.com
Gordon Bell: Every Beat of My Heart
QS15 Conference Preview: Stephen Cartwright on 17 Years of Location Tracking
What’s in My Gut
We have a great list for you today. Special thanks to all those who are reaching out via Twitter to send us articles, links, and other bits of interestingness. Keep ‘em coming!
Self-Experimentation: Crossing the Borders Between Science, Art, and Philosophy, 1840–1920 by Katrin Solhdju. This brief essay lays out a great foundation for anyone interesting in the history and philosophy of science, with an obvious focus on the self-experiment. This essay is hosted at the Max Plank Institute for the History of Science, at which I highly recommend spending some time clicking around and reading the wonderful essays and articles.
After the Data Confessional: interview with Ellie Harrison by Stephen Fortune. A very interesting and thought-provoking interview with artist Ellie Harrison. For six years self-tracking data was the core component of Ellie’s work as an artist. Then she decided to stop and reconsider her tracking practices and what it meant to her and her work.
Data is the New “___” by Sara M. Watson. “What do we talk about when we talk about data?” is the question Sara posses here to frame a wonderful piece on how our use of metaphors influences our view of data.
A brief history of big data everyone should read by Bernard Marr. If we’re going to talk about how we talk about data it is probably useful to have some historical context. Great timeline here of data in society.
Baby Lucent: Pitfalls of Applying Quantified Self to Baby Products [PDF] by Kevin Gaunt, Júlia Nacsa, and Marcel Penz. An interesting article here from three Swedish design students that looks at current baby and parenting tracking technology. They also conducted a design process to develop a future tracking concept to better understand parent’s reactions to baby tracking. I thought there were a few interesting finding from their interviews.
Hey, Nate: There Is No ‘Rich Data’ In Women’s Sports by Allison McCann. It only seems fitting that a few days before this weekend’s MIT Sloan Conference on Sports Analytics Conference, the “it” place to learn about and discuss sports data, that we learn about the amazing dearth of data collected and published about women’s sports.
Analyzing Email Data by Austin G. Waters. A great deep dive into the 23,965 emails that Austin has collected in his personal account since 2009. I won’t spoil it, but this post just keeps getting better and better as you scroll. Bonus points to Austin for describing his methods and open-sourcing the code he used to conduct this analysis.
The App That Tricked My Family Into Exercising by Adam Weitz. Not a lot of data in this post, but I enjoyed the personal and social changes Adam described through his use the Human activity tracking app.
Smart Art by Natasha Dzurny. Using IFTTT and a few littleBits modules Natasha created a piece of artwork that reflects how often she goes to the gym. Would love to seem more DIY data reflections like this!
How does weather affect U.S. sleep patterns? by Sleep Cycle. Sleep Cycle analyzed 142,272 sleep reports from their users (recorded in January of 2015) to explore mood upon awakening, stress levels before bed, and sleep quality. Fascinating stuff.
HHS Expands Its Approach to Making Research Results Freely Available For the Public
Many Patients Would Like To Hide Some Of Their Medical Histories From Their Doctors
Doctors say data fees are blocking health reform
From the Forum
Best ECG/EKG Tool for Exercise
BodyMedia API – Anyone have an active key/application?
Sleep monitor recommendations for research on sleep in hospitals
Simplified nutrition, alertness, mood tracking
We hope you enjoy this week’s What We’re Reading list!
The Wow of Wearables by Joseph Kvedar. An excellent post here in the wake of the “Smartphones vs. Wearables” hype in the past weeks. Favorite part:
“I’d have to say that reports of the death of wearables have been greatly exaggerated. The power of sensor-generated data in personal health and chronic illness management is simply too powerful to ignore.”
Survival of the Fittest: Health Care Accelerators Evolve Toward Specialization by Lisa Suennen. If you’re at all interested in the recent surge in health and healthcare focused accelerators this is for you. Excellent reporting. (Thanks for sharing Maarten!)
Your Brain Is Primed To Reach False Conclusions by Christie Aschwanden. Fascinating piece here about the nature of the “illusion of causality.”
A Few Throughs About Patient Health Data by Emil Chiauzzi. Emil, Research Director at PatientsLikeMe, lays out four point to consider when thinking about how to best use and grow self-collected patient data.
Having Parkinson’s since I was 13 has made me an expert in self-care by Sara Riggare.
I am the only person with the whole picture. To me, self-care is everything I do to stay as healthy as possible with a disease that is a difficult life companion. It entails everything from making sure I take my medication in the optimal way, to eating healthily, getting enough sleep, to making sure I stay physically active. I also make an effort to learn as much as I can about my condition; my neurologist says that I know more about Parkinson’s research than he does. I don’t find that odd, since he needs to try to stay on top of research in probably hundreds of neurological diseases, whereas I focus on just one.
From Bathroom to Healthroom: How Magical Technology will Revolutionize Human Health by Juhan Sonin. A beautifully written and illustrated essay on the design of our personal healthcare future.
Experimenting with sprints at the end of exercise routines by Gustavo M. Gustavo is a person with type 1 diabetes. After reading that post-exercise high intensity exertion might have an effect on blood glucose he put it to the test.
On Using RescueTime to Monitor Activity and Increase Productivity by Tamara Hala. Tamara walks us through the last three years of her RescueTime data and how she used that information to understand her work and productivity.
How Do You Find Time to Write? by Jamie Todd Rubin. Jamie has been writing for 576 consecutive days. How does he do it? A mixture of data and insight of course!
Say “I Love You” With Mapping by Daniel Rosner. Wonderful to see CHI papers ending up on Medium. This seems like a fun self-tracking/art project.
Cleaning up and visualizing my food log data with JMP 12 by Shannon Conners. Once again, Shannon displays a wonderful ability to wow us with her data analysis and visualization. Above is four years of food tracking data!
Two Trains: Sonification of Income Inequality on the NYC Subway by Brian Foo. Brian created this data-driven musical composition based on income data from neighborhoods the border the 2 train. Beautiful work.
Walgreens adds PatientsLikeMe data on medication side effects
How Open Data Can Reveal—And Correct—The Faults In Our Health System
Big Data is our Generation’s Civil Rights Issue, and We Don’t Know It.
Enjoy this week’s list!
Would You Share Private Data for the Good of City Planning? by Henry Grabar. The use of personal, and typically private, data for municipal planning and research is becoming more common. Strava, Uber, and other companies are passing along their user data to government bodies interested in understanding their constituents. In this article, past projects are described and new ideas are put forth about this growing trend.
The social network for people who want to upload their DNA to the Internet by Daniela Hernandez. A wonderful piece of journalism on the growing OpenSNP platform for open user-donated genetic data. Take some time and read the whole thing. (Full disclosure: My 23&Me data is available on OpenSNP.org.)
What Cognition-as-a-Service should mean? by Debidatta Dwibedi. The promise of fitness trackers for many is that the use of them will improve one’s fitness. Dwibedi expresses the desire for a tool to make one wiser by helping the user avoid logical fallacies. There are tools that can help, like spaced repetition.
Connected Car: Quantified Self becomes Quantified Car by Melanie Swan.
Sensors sensors everywhere
Near and far
On your wrist
In your home
And in your car.
What On Kawara’s Analog Wisdom at the Guggenheim Has to Offer a Digital World by Ben Davis. A fantastic peek into “On Kawara: Silence” a recently opened retrospective hosted at the Guggenheim.
He was making art about the “quantified self”—the contemporary self-improvement craze for tracking and charting one’s personal data—not just before the fitbit, but before the handheld calculator.
What My Hearing Aid Taught Me About the Future of Wearables by Ryan Budish. A great article here about how to think about possible ways our technology with change and shape the world around us. Special consideration is given to our ever evolving relationship with the tools of wearable computing.
I tried to quantify my sex life—and I am appalled (NSFW language) by Miles Klee. I went back and forth whether to include this here, but in the end I think it’s important to expose tracking of all types.
How I audited my daily media habits and improved the way I read by Lydia Laurenson. Lydia was concerned with the amount of bad content she was reading on the web.For a month, she rated the articles she read according to a 5-point scale with categories like “I’m actually angry I clicked this link” and “Wow, this is really cool or useful. I’m glad I saw this.” With these ratings, she was able to see which publications produced good contents, and which outlets gave her recommendations worth her time. You can check out her (empty) tracking spreadsheet here.
The Quantified Chef by Dan Brown. Dan doesn’t fancy himself a self-tracker, but was interested in understanding his cooking habits as the main dinner cook for his family. Some interesting finds and thoughts about what it means to collect data on yourself.
Using a Log Book and Excel To Assess Time Use by Morris Villarroel. Morris spoke about how he uses journals to track his life at our 2014 QS Europe Conference. In this post, he explains how he transfers hand-written data into Excel for more in-depth analysis.
Sid Lee Dashboard. Sid Lee, a creative agency, outfitted it’s Paris office with multiple sensors and data gathering systems powered by Arduinos to feed a beautiful real-time data dashboard. Make sure to click through for the interactive site and watch their short video.
Two Thousand And Fourteen by Tyler Baird. A sentence or two cannot do this amazing work justice. Click, read, and take in the 8,760 hours of Tyler’s tracked life.
The BMJ Today: Patient Centered Care
Health Data Exploration Project Announces Agile Research Project Awards
FDA makes official its hands-off approach to regulating health apps and medical software
Small thoughts on large cohorts
Selling your right of privacy at $5 a pop