QS | Public Health Symposium: Margaret McKenna

This week we’re taking a look back at our 2014 Quantified Self Public Health Symposium and highlighting some of the wonderful talks and presentations.  We convened this meeting in order to bring together the research and toolmaker communities. Both of these groups have questions about data, research, and how to translate the vast amount of self-tracking data into something useful and understandable for a wider audience.

As part of our pre-conference work we took some time speak with a few attendees who we thought could offer a unique perspective. One of those attendees was Margaret McKenna. Margaret leads the Data & Analytics team at RunKeeper, one of the largest health and fitness data platforms. In our conversation and in her wonderful talk below Margaret spoke about two important issues we, as a community of users, makers, and researchers, need to think about as we explore personal data for the public good.

The first of these is matching research questions with toolmaker needs and questions. We heard from Margaret and others in the toolmaker community that there is a near constant stream of requests for data from researchers exploring a variety of questions related to health and fitness. However, many of these requests do not match the questions and ideas circulating internally. For instance, she mentioned a request to examine if RunKeeper user data matched with the current physical activity guidelines. However, the breadth and depth of data available to Margaret and her team open up the possibility to re-evaulate the guidelines, perhaps making them more appropriate and personalized based on actual activity patterns.

Additionally, Margaret brought up something that we’ve heard many times in the QS community – the need to understand the context of the data and it’s true representativeness. Yes, there is a great deal of personal data being collected and it may hold some hidden truths and new understanding of the realities of human behavior, but it can only reveal what is available to it. That is, there is a risk of depending too much on data derived from QS tools for “answers” and thus leaving out those who either don’t use self-tracking or don’t have access or means to use them.

Enjoy Margaret’s talk below and keep an eye out for more posts this week from our Quantified Self Public Health Symposium.

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QS | Public Health Symposium: Susannah Fox on Secret Questions and Naked Truths

Personal data, personal meaning. That’s the guiding principle of much of the work we do here at QS Labs. From our show&tell talks and how-to’s, to our worldwide network of meetups and carefully curated unconferences, we strive to help people make sense of their personal data and inspire others to do the same. However, over the last few years we’ve started to see that there is a third actor in the Quantified Self space. Data collected in the ordinary course of life can hold clues about some of our most pressing questions related to human health and wellbeing. Personal data might be a resource for public good.

On April 3, 2014 Quantified Self Labs with support from the Robert Wood Johnson Foundation, the US Department of Health and Human Services, and Calit2 at UCSD hosted the first Quantified Self Public Health Symposium. We gathered over 100 researchers, toolmakers, science leaders, and pioneering users to open up a discussion about what it means to use personal data for the public good. Over the course of the day we hosted a variety of talks, discussions, and toolmaker demonstrations. This week we’ll be highlighting some of the outstanding talks delivered at the symposium and we’re kicking it off with one of our favorites.

Susannah Fox has been a friend and colleague for many years. Her pioneering work at the Pew Internet and Life Project has inspired us many times over and remains the standard for research pertaining to self-tracking. We asked Susannah to help us open up the meeting by discussing some of her research findings as well as her thoughts on self-tracking in the broader landscape of health and healthcare.

(A transcript of Susannah’s talk can be found on her website here.)

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Meetups This Week

There are a stellar collection of meetups going on this week. 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!

Tuesday (September 2)
Geneva, Switzerland
The Geneva group will feature a show&tell about tracking weight-loss alongside Basis Band data.

Wednesday (September 3)
Oslo, Norway
The great Oslo group will be having their fourth meeting.

Thursday (September 4)
Berlin, Germany
The Berlin group is adopting a workshop format this week to talk about habit formation.

Cologne, Germany
The Cologne group has a packed program with talks on happiness, healthcare, and cryonics.

Sunday (September 7)
Lincoln, Nebraska
The Lincoln group has a great program that will cover measuring ketosis, the effect of antioxidants on migraines, tracking sleep, and using DNA to inform fitness plans.

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What We Are Reading

Enjoy this week’s list!

Articles
Effect of Self-monitoring and Medication Self-titration on Systolic Blood Pressure in Hypertensive Patients at High Risk of Cardiovascular Disease by Richard McManus et al. An interesting research paper here about using self-monitoring to reduce blood pressure. The paper is behind a paywall, but since you’re nice we’ve put a copy here.

Apple Prohibits HealthKit App Developers From Selling Health Data by Mark Sullivan. Some interesting news here from Apple in advance of their new phone and possible device release in a few weeks. I applaud the move, but would like to see more information about data portability in the next release.

Science Advisor, Larry Smarr by 23andMe. Great to hear our friends 23andMe and Larry Smarr are getting together to help work on understanding Inflammatory Bowel Disease. If you’ve been diagnosed with Crohn’s disease or ulcerative colitis consider joining the study.

Personal Health Data: It’s Amazing Potential and Privacy Perils by Beth Kanter. A lot of people have been talking recently about the privacy implications of using different tracking tools and technologies. In this short post Beth opens up some interesting questions about why we might or might not open up our personal data to others. Make sure to read through for some insightful comments as well.

Show&Tell
Let’s Talk About 3 Months of Self-Quantifying by Frank Rousseau. Frank is one of the founders of Cozy Cloud, a personal could service. He’s also designed Kyou a custom tracker system built on top of Cozy. He’s also been using the services to track his life. In this post he explain how tracking his activity, sleep, weight, and other habits led to some interesting insights about his behavior.

The iPhone 5S’ M7 Predictor as a Predictor of Fitbit Steps by Zach Jones. A great post here by Zach as he explores the data taken from his iPhone 5S vs. his Fitbit.

Using Open Data to Predict When You Might Get Your Next Parking Ticket by Ben Wellington. Not strictly a personal data show&tell here, but as someone who suffers from street sweeping parking tickets somewhat frequently I found this post fascinating. Now to see if Los Angeles has open data…

Visualizations
RWTime
What Time of Day Do People Run? by Robert James Reese, Dan Fuehrer, and Christine Fennessay. Runners World and Runkeeper partnered to understand the running habits of runners around the world. Some interesting insights here!

FitbitMin
What Happens When You Graduate and Get a Real Job by Reddit user matei1987. A really neat visualization of min-by-min level Fitbit step data.

DataDesign
Data + Design by Infoactive and the Donald W. Reynolds Institute. A really interesting and unique take on a data visualization book. This CC-licensed, open source, and collaborative project represents the work of many volunteers. I’ve only read through a few chapters, but it seems to be a wonderful resource for anyone working in data visualization.

From the Forum
Good Morning World!
Quantified Chess
New Activity Tracker to Replace BodyMedia?
Indirect Mood Measures
OPI TrueSense for Sleep Tracking

Want to receive the weekly What We Are Reading posts in your inbox? We’ve set up a simple newsletter just for you. Click here to subscribe.  Do you have a self-tracking story, visualization, or interesting link you want to share? Submit it now!

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Jan Szelagiewicz: Losing 40 kg with Self-Tracking

On July 4th, 2009 Jan Szelagiewicz decided to make a change in his life. After taking stock of his personal health and his family history with heart disease he began a weight-loss journey that included a variety of self-tracking tools. Over the course of a few years Jan tracked his diet, activities such as cycling, swimming, and running, and his strength. In this talk, presented at the Quantified Self Warsaw meetup group, Jan describes how he used self-tracking to mark his progress and stay on course.

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Lee Rogers: Why Annual Reporting

Lee Rogers has been collecting data about himself for over three years. The daily checkins, movements, and other activities of his life are capture by automatic and passive systems and tools. What makes Lee a bit different than most is that he’s set up a personal automation system to collect and make sense of all that data. A big part of that system is creating an annual report every year that focuses on his goals and different methods to display and visualize the vast amount of information he’s collecting. In this talk, presented at the Bay Area QS meetup group, Lee explains his data collection and why he values these annual snapshots of his life.

You can read a transcript of Lee’s excellent talk here and view his 20112012, and 2013 reports on his website.

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Meetups This Week

We have a great set of meet ups this week. If you are in the area for any of them, be sure not to miss it! To go 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!

Tuesday (August 26)
Houston, Texas
The Houston group will be taking a break from the heat to talk self-tracking.

Los Angeles, California
Looks like it will be another full lineup for the group in Southern California.

Wednesday (August 27)
Auckland, New Zealand
With a guest speaker and a round of Show&Tells, this should be a great meetup to attend.

Thursday (August 28)
Chicago, Illinois
This should be a fun meetup with the telling of two accelerometer adventures and a Kickstarter story.

Saturday (August 30)
Indianopolis, Indiana
This great event will feature stories from fasting self-experiments.

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What We’re Reading

Ernesto is out for this round, so I’m filling in. I hope you enjoy this week’s list of articles, show&tells and visualizations!

Articles
“Standing Up for American Innovation and Your Privacy in the Digital Age” by Senator Ron Wyden. Access to your personal data is something that we care about and has been a topic of conversation at QS meetups and conferences. During Portland’s recent TechFestNW, Oregon Senator Ron Wyden took a strong stance on the nature of the relationship of the user and his/her data by criticizing the “Third-Party doctrine”.

Digital Health State of the Industry by MobileHealthNews.  In the hype-filled world of digital health, MobiHealthNews is one of the (few) sources we trust for business reports. Their latest quarterly roundup is very well done, as always.

Show&Tell
Better Living Through Data by James Davenport. James has over four years of battery log data from three laptops. By looking at the data, he saw a view of his own computer usage as well as a glimpse of his laptop’s secret life in the middle of the night. If you want to keep logs of your laptop’s battery, you can use the same script.

Visualizations
Which_Cities_Get_the_Most_Sleep__-_WSJ_com 2Which_Cities_Get_the_Most_Sleep__-_WSJ_com

Which Cities get the most sleep? by Stuart A. Thompson. We showed a visualization last week that used UP user data. This visualization is from the same dataset, but I couldn’t pass up showing it because the sleep/step pattern contrast between New York and Orlando is so interesting.

From the Forum
OPI TrueSense for Sleep Tracking
Report App Question
What is your opinion on neurofeedback?

This Week on Quantifiedself.com
Cors Brinkman: Lifelog as Self-Portrait
Eric Boyd: Tracking My Daily Rhythm With a Nike FuelBand
Kevin Krejci: An Update on Tracking Parkinson’s Disease
Mark Drangsholt: Deciphering My Brain Fog
Mark Leavitt: Whipping up My Willpower

Want to receive the weekly What We Are Reading posts in your inbox? We’ve set up a simple newsletter just for you. Click here to subscribe.  Do you have a self-tracking story, visualization, or interesting link you want to share? Submit it now!

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Mark Leavitt: Whipping up My Willpower

When we decide to track one thing, we sometimes find that we are indirectly tracking something else.  That is the theme of today’s talk.

When Mark Leavitt was 57, he found out that he had heart disease, a condition that runs in his family. Mark set about making some life changes. He tracked his weight while adopting a low-fat diet. His tracking showed him that he was making progress and that progress encouraged him to keep tracking. But once Mark’s weight loss stalled and then started to backslide (though he had maintained his diet) his desire to track dwindled and was then snuffed out by a major life event.

Though he was ostensibly tracking weight, this experience gave him some insight into his motivation. He began to build a mental model of his willpower. When was it strong? When was it weak? Using his background as a doctor to make assumptions on the nature of his willpower, he used the tracking of other lifestyle changes, such as movement and strength-training, to test those assumptions and better understand how to follow through on his intentions.

Watch below to see what Mark found worked for him and if you would like to see how Mark’s keeping up with his habits, you can check out his live dashboard here.

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Mark Drangsholt: Deciphering My Brain Fog

One of the benefits of long-term self-tracking is that one builds up a toolbox of investigatory methods that can be drawn upon when medical adversity hits. One year ago, when Mark Drangsholt experienced brain fog during a research retreat while on Orcas Island in the Pacific Northwest, he had to draw upon the self-tracking tools at his disposal to figure out what was behind this troubling symptom.

Watch this invaluable talk on how Mark was able to combine his self-tracking investigation with his medical treatments to significantly improve his neurocognitive condition.

Here is Mark’s description of his talk:

What did you do?
I identified that I had neurocognitive (brain) abnormalities – which decreased my memory function (less recall) – and verified it with a neuropsychologist’s extensive tests.  I tried several trials of supplements with only slight improvement.  I searched for possible causes which included being an APOE-4 gene carrier and having past bouts of atrial fibrillation.

How did you do it?
Through daily, weekly and monthly tracking of many variables including body weight, percent body fat, physical activity, Total, HDL, LDL cholesterol, depression, etc.   I created global indices of neurocognitive function and reconstructed global neurocog function using a daily schedule and electronic diary with notes, recall of days and events of decreased memory function, academic and clinical work output, etc.  I asked for a referral to a neuropsychologist and had 4 hours of comprehensive neurocog testing.   

What did you learn?
My hunch that I had developed some neurocognitive changes was verified by the neuropsychologist as “early white matter dysfunction”.  A brain MRI showed no abnormalities.  Trials of resveratrol supplements only helped slightly.   There were some waxing and waning of symptoms, worsened by lack of sleep and high negative stress while working.  A trial with a statin called, “Simvastatin” (10 mg) began to lessen the memory problems, and a dramatic improvement occurred after 2.5-3 weeks. Subsequent retesting 3 months later showed significant improvement in the category related to white matter dysfunction in the brain.  Eight months later, I am still doing well – perhaps even more improvement – in neurocog function.

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