Alice Pilgram: My Journey with Diabetes

In 2008 Alice Pilgram was diagnosed with type 2 diabetes. Faced with numerous life changes and having to now track multiple pieces of data, she started to feel overburdened. In this talk, presented at the Bay Area QS meetup group, she explains how a new simple tracking system helped her see the bigger picture.

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QS15 Conference Preview: Glen Lubbert on Tracking Alcohol Consumption

On June 18-20 we’ll be hosting the QS15 Conference & Activate Expo in San Francisco at the beautiful Fort Mason Center. This will be a very special year with two days of inspiring talks, demos, and discussion with your fellow self-trackers and toolmakers, plus a third day dedicated to the Activate Exposition. As we start to fill out our program we’ll be highlighting speakers, discussion leaders, sponsors, and attendees here.

GlenLubbertWe are excited to be having Glen Lubbert joining us at the QS15 Conference & Activate Expo. Glen has been developing tools and systems to help individuals improve their health and wellness for almost twenty years. In his daily life, he’s using multiple QS tools to help him understand himself, such as the Withings scale, Beddit sleep tracker, WaterMinder, Moves, OptimizeMe, and Jawbone’s UP.

During the conference Glen will be giving a show&tell talk about what he’s learned from tracking his alcohol consumption. We spoke with Glen about his talk, and why he decided to start tracking what he was drinking.

“Alcohol is part of the very fabric of our American culture with our founding fathers to our current President utilizing its benefits. Having a couple drinks a day leads to longer lives by reducing stress and promoting sociability.  So what is the right amount and how do we keep our bodies in equilibrium so we’re humming along for a long and happy life?”

Glen has been tracking his consumption, paying close attention to the type of drink, who he’s with, and the reasons/occasion. Specifically, he’ll be sharing what he’s learned by connecting his drinking with other personal variables such physical performance, weight, body fat, pH levels, and sleep.

A breakdown of Glen’s weekly alcohol consumption.

A breakdown of Glen’s weekly alcohol consumption.

We also spoke with Glen about what he’s looking forward to at the conference and he mentioned that visualization and organization of data is particularly interesting to him.

I look forward to seeing any projects or tools that combine data sets into useful visualizations and insights. I’m fascinated with Fluxstream and ZenoBase, and I’m curious to see what else is being done to organize and visualize our personal data tracking tools.

If you’re interested in tracking what you’re drinking, want to speak with an seasoned entrepreneur like Glen, or just want to meet and mingle with our great Quantified Self community members, then register now for the QS15 Conference & Activate Expo. Early Bird tickets are going fast and will be sold out very soon!

Register now!

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Meetups This Week

There will be two Quantified Self meetups getting together this week. Pittsburgh will have a couple show&tell talks from Matt Tornowske and Randy Sargent on the “Qualified Self” and tracking sleep apnea symptoms, respectively.

To see when the next meetup in your area is, check the full list of the over 100 QS meetup groups in the right sidebar. Don’t see one near you? Why not start your own! If you organize a QS meetup, please post pictures of your event to the Meetup website. We love seeing them.

Tuesday, March 31
Cologne, Germany

Wednesday, April 1
Pittsburgh, Pennsylvania

Last week was busy for QS meetups and we’re happy to show pictures from Cambridge, Stockholm, Berlin and QSXX-San Francisco! Photos courtesy of Rasmus Peterson, Sune Kaae, Florian Schumacher, and Kate Farnady.

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What We Are Reading

WWAR_Header
Enjoy this week’s list!

Articles
Antebellum Data Journalism: Or, How Big Data Busted Abe Lincoln by Scott Klein. A fascinating look back at the history of using data in periodicals. Particular emphasis is give to the story of how Horace Greely, a newspaper editor and congressman, used data journalism techniques commonly employed today to expose issues with congressman travel reimbursement policy in 1848.

Imagining the Future of Health Data by Susannah Fox. Having followed, and participated in, the Data4Health events, all of us here at QS Labs are excited for the release of the full report next week. We’ll also be watching the live webcast. Join us!

2014 Motor Trend’s Best Driver’s Car: How We Test by Kim Reynold. I know what you’re thinking, “What is a car review article doing on this list?” Well, it turns out that Motor Trend not only tracked the vehicles in this year’s testing, but also the drivers. This short article described they methods they used to track the biological signals and facial characteristics of their test drivers to derive emotion, focus, and other data.

Why you patient partners on your research team by Holly Witteman. A brilliant essay on the experiences of a researcher, who also lives with a chronic disease, regarding including patients as part of the research design process.

“[…] these people have saved our research projects countless trips down wrong paths.”

Are We at a Tipping Point for Open Data? by Phill Jones. A fascinating post with a rich amount of information and background on where the research community is in regards to data sharing and data access, and considerations for continuing to move forward.

By The Numbers by Abby Norman. Haunting and special. A must read.

Show&Tell
Narrative Clock By Morris Villarroel. Morris is a great member of our community and the organizer of the Mardid QS Meetup group. In this post he looks back on his nearly 400,000 Narrative Clip photos and breaks down what you can learn from just looking at slices of time across many days.

Quantified Myself – The Beginning By Norbert Berencsy. Norbert takes the reader on a journey of testing and experimenting with different sleep apps. I can’t wait for more posts!

Sweet Dreams are Made of These: Wearable Tech and Extra ZZZ… by Dave Champman. Dave is using an UP24 to track his activity and now this sleep. In this short post, he explains his own sleep tracking and the benefit he gets out of seeing his friend’s an colleague’s data.

Comparing my Fitbit One and iPhone 6 by Eddie Smith. A brilliant and thorough dive into the actual differences in step counts and floor estimation from two devices over daily living and a few specific experiments. My favorite part:

”Rather than get hung up on data accuracy, I think it makes sense to focus on the main goal: move more. I’m absolutely fascinated with the fact that small computers can constantly measure my motion and give me incentive to move more by constantly informing me about my movement patterns.”

Visualizations

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A Year at Work. Gordon Mei visualizes his time spent at work during 2014 using the Moves app. Makes sure to click through for the full visualization.

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Four Years of Purchases by Matt Yancey. Matt was curious how his purchasing habits changed as he moved around, from the suburbs into cities. Fascinating and easy to understand visualization.

FitbitWeather
Weathering the Winter by Fitbit. An interesting visualization of the differences within and across states for physical activity during winter months vs summer months.

Access Links
Astronaut twins study raises questions about genetic privacy
Our Data, Our Health
Study Shows People Act To Protect Privacy When Told How Often Phone Apps Share Personal Information
Data accessibility is key to a successful activity tracking system
The Heart of the Matter: I can’t access the data generated by my implanted defibrillator. That’s absurd.

From the Forum
Heart Rate Monitor for Cardiac Patient
Food allergy/intolerance tests
Want an app or device to track my hormones (esp. estrogen and progesterone)
HRV Expert by Cardiomood data export from phone to excel or some other place

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Work With Us

Quantified Self Labs is growing and we’re looking for a few good people to join our team. If you share our interest in “self-knowledge through numbers” and enjoy working with a talented and experienced team both in person and remotely, please look at the open job and internships listed below. To apply, send a cover letter and resume/cv to labs@quantifiedself.com. Please include your salary requirements. If you want to work with us, but don’t see a specific job listed, feel free to get in touch. We welcome questions and referrals.

Community & Communications Intern

We’re looking for a great Community & Communications intern to help us engage with our worldwide Quantified Self community through in-person events, regular online communication, and ongoing research activities. This is a great job for somebody who believes in the QS mission, and is eager to gain experience building engagement in Bay Area cultural and technical communities.

Full job description for the Community and Communications Intern

Associate Editor, QS Access

We’re looking for a talented researcher, writer and editor with a keen interest in advocating for the right of all individuals to have access to their own data. This is a great job for a journalism school student or recent graduate who is deeply interested in Quantified Self, public health, data access advocacy, and the social impact of new technologies. You will work with a small, experienced team that cares deeply about extending journalistic values of independence and accuracy into new formats.

Full job description for the Associate editor, QS Access

About Quantified Self Labs
Quantified Self Labs is a California-based company founded by Gary Wolf and Kevin Kelly that serves the Quantified Self user community worldwide. Our mission is to inspire meaningful discoveries about ourselves and our communities that are grounded in accurate observation and enlivened by a spirit of friendship. We produce international meetings, conferences and expositions, community forums, web content and services, and guides to self-tracking ideas, methods, and tools.  We’re committed to creating a diverse and open work environment.

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Open Research, Open Data, Open Humans

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“Open Humans aims to break down data silos in human health and research. We believe data has a huge potential to live and grow beyond the boundaries a single study or program. Our online portal allows members to aggregate data from the research they participate in. By connecting individuals willing to share existing research data about themselves with researchers who are interested in using that data, data can be re-used and built upon.” — OpenHumans.org

On March 24, 2015 the Open Humans Network officially opened their virtual doors and began allowing individuals to sign up and engage in a new model of participatory research. We spoke with Co-founder & Principal Investigator of the Public Data Sharing study, Madeleine Ball, Ph.D. about Open Humans, what it means for research, and what we can look foward to from this exciting initiative. The following is an edited transcript of that conversation.


It’s been a lot of work up to this point.

We’re grateful to have the funding support of two organizations to help get this off the ground, the Knight Foundation and the Robert Wood Johnson Foundation. It’s been a lot of work to get to this point, from hiring Beau Gunderson as our Senior Software Gardener to launching with our first three studies. We’re excited to be partnering with the Harvard Personal Genomes Project, the American Gut study, and the GoViral study. These are the seed studies, what we’ll build off of in the coming months and years. Today, we’re excited to start letting participants in these projects, and all individuals interested in participating in research, know about Open Humans.

This is an open invitation to join us.

We’re also working to make it easier for research partners to join the Open Humans Network. We’ve already started receiving interest from researchers that want to integrate with Open Humans or start working with our already growing public data sets. We’ve set parameters regarding how you have to behave as a study as well as how researchers looking to work with our members should engage with us. (You can find out more about that here.)

For members who sign up with us we’ve developed methods for them to control access to their data. Whether that is data from personal health devices and apps like Runkeeper (adding this to our next project), genetic data, or other data sources derived from participating studies, each individual member will have the ability to establish a peer-to-peer interaction. Members can allow access to some data, but not others. They may choose to release some or all of their data publicly, or the may choose to only share with one study. In the end it’s up to them and their individuals goals.

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What excites me about Open Humans is the potential we have to transform future research studies — from how they treat data to how they think about data sharing. We’re building our system so that participants are central to the data process. A good example of this when researchers use our member’s data they must also agree to return any new data that results from their research back to the original participant. This decentralization of data is a key component of our design. No single person, researchers, or study has all the data.

We’ve also built in the ability for researchers to contact our members who contribute data. The idea that researchers must come up with all the right questions before starting a study is a recipe for failure. Researchers are not psychic, that can’t forsee what interesting questions might come up in the future. By opening up the ability for these connections to take place in the design of Open Humans, we’re creating the ability to continue asking questions of specific individuals, or groups of people, far in to the future.

We’re founded on the principle of transparency. You as a researcher, or participant member can see what we’re all about. You can even see our Open Human member profiles (Madeleine BallJason BobeBeau Gunderson). We worked with Marcia Hoffman, special counsel to the Electronic Frontier Foundation, to develop our Terms of Use and Data Use Policies so that they’re readable and easily understood. We want people to read them, we want them to ask us questions. We want people to be engaged and involved.

I think this work is creating a new form of data sharing that will unlock a world of new exciting possibilities. Our hope is that when participants start getting data back from studies, and have the ability to use it and share it how they wish, that participation in research will be more rewarding. This model helps participants become a respected member of the evolving research conversations happening all over world. We know a lot of people don’t participate in research, even researchers who rely on participants don’t participate in studies. Hopefully this work will help move the needle.

It’s wonderful to see the long scroll of members.


As of this writing the Open Humans Network has over 200 individuals who have created member profiles. If you’re interested in participating in open research you can learn more and sign up here. If you are a researcher or personal data company interested in integrating with Open Humans you can get in touch with the team here.

We invite you to share your data access stories, and this article with the #qsaccess hashtag and follow along here, on Medium, and @quantifiedself.

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QS15 Conference Preview: Bill Schuller’s Quantified Talk

On June 18-20 we’ll be hosting the QS15 Conference & Activate Expo in San Francisco at the beautiful Fort Mason Center. This will be a very special year with two days of inspiring talks, demos, and discussion with your fellow self-trackers and toolmakers, plus a third day dedicated to the Activate Exposition. As we start to fill out our program we’ll be highlighting speakers, discussion leaders, sponsors, and attendees here.

Meditation & Attention Values During Public Speaking

Meditation & Attention Values During Public Speaking

We are excited to have Bill Schuller contributing to our growing QS15 Conference program with his “Quantified Talk.” Bill has been involved in the Quantified Self community since 2009 and currently organizes the Dallas Fort Worth QS meetup group.

BillSchullerThis June, Bill will be sharing his process and what he’s learned from tracking his public speaking. Stemming from his very first show&tell talk in 2010 he’s been working to figure out ways to understand and ultimately quell the butterflies and nerves that come from speaking in front of an unfamiliar crowd.

We spoke with Bill about what he’s looking forward to at the conference and like many of our attendees he’s interested in what other’s are learning from their data, what new tools are being used, and how to turn vast amounts of data into actionable information.

“I love to see what wonderful things people are learning by reflecting on their tracking. Of course there’s also the gadgets. So many gadgets. I am also very interested in how QS tools and methodologies can help individuals who happen to run small businesses improve their business outcomes.”

If you’re interested in tracking and improving public speaking, or just want to meet and mingle with our great Quantified Self community members then register now for the QS15 Conference & Activate Expo. Early Bird tickets are going fast and will be sold out very soon!

Register now!

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Meetups This Week

This week will see 8 Quantified Self meetups with jam-packed agendas.

The QS family of meetup groups continues to expand with Bucharest having their very first Show&Tell meeting.

There will be two meetups occurring in San Francisco this week. QSXX will have a show&tell talk from Valerie Lanard on quitting TV. QSXX meetups are for women or those who identify as women. You can find out more here. QS San Francisco‘s meeting will have a stress-management and calming theme.

Cambridge will have talks on home blood test based analytics by Hemavault, anxiety monitoring via sensors in clothes, and a person’s experience tracking activities for 2 years. Stockholm will have Mattias Ribbing and Jonas Bergqvist as guests to speak about memory training, nutrition and fitness. Houston will have researchers Susan Schembre and Troy Gilchrist present their recent research on the gut biome and continuous glucose monitoring.

Berlin will feature a show&tell talk from Maximilian Gotzler on tracking high-sensitive C-reactive protein (hsCRP), a general indicator for inflammation, in his blood over time to find out which food or lifestyle factors influence inflammation in his body. They will also have a toolmaker talk by Josephine Worseck of Kenkodo, a blood test for measuring metabolites.

To see when the next meetup in your area is, check the full list of the over 100 QS meetup groups in the right sidebar. Don’t see one near you? Why not start your own!

Monday, March 23
Cambridge, England

Tuesday, March 24
Houston, Texas
Stockholm, Sweden

Wednesday, March 25
Berlin, Germany
QSXX – San Francisco, California
San Francisco, California

Friday, March 27
Bucharest, Romania

Saturday, March 28
Denton, Texas

Lastly, some photos from last week’s meetup in Washington D.C.:

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What We Are Reading

Enjoy this week’s list!

Articles
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.

Show&Tell
ShannonConners_FoodLogging 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.”

 

happiness-dashboard 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.

Visualizations
deardata 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.

 

AirTransformed 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.

Access Links
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

From the Forum
Looking for Android Time Tracking App
Looking for a software / app to track the general health
Heart Rate and Sleep Monitor

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Ulrich Atz: Tracking 120,000 Pushups Together

In 2013 Ulrich Atz completed a unique non-digital trackign experience. When the beginning of 2014 rolled around he was convinced by a friend to start an ambitious project to complete 10,000 pushups in one year. Using his interest in habits and self-tracking he built a simple system to bring his friends into the fold so that they could all track and learn together. In this talk, presented at the London QS meetup group, he explains just how this all got started, what happened to different “types” of people throughout the year, and what he learned.

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