Topic Archives: Videos

QS | Public Health Symposium: Jason Bobe on Participant Centered Research

As part of the Quantified Self Public Health Symposium, we invited a variety of individuals from the research and academic community. These included visionaries and new investigators in public health, human-computer interaction, and medicine. One of these was Jason Bobe, the Executive Director of the Personal Genome Project. When we think of the intersection of self-tracking and health, it’s harder to find something more definitive and personal than one’s own genetic code. The Personal Genome Project has operated since 2005 as a large scale research project that “bring together genomic, environmental and human trait data.”

We asked Jason to talk about his experience leading a remarkably different research agenda than what is commonly observed in health and medical research. From the outset, the design of the Personal Genome Project was intended to fully involve and respect the autonomy, skills, and knowledge of their participants. This is manifested most clearly one of their defining characteristics, that each participant receives a full copy of their genomic data upon participation. It may be surprising to learn that this is an anomaly in most, if not all, health research. As Jason noted at the symposium, we live in an investigator-centered research environment where participants are called on to give up their data for the greater good. In Jason’s talk below, these truths are exposed, as well as a few example and insights related to how the research community can move towards a more participant-centered design as they begin to address large amounts of personal self-tracking data being gathered around the world.

I found myself returning to this talk recently when the NIH released a new Genomic Data Sharing Policy that will be applied to all NIH-funded research proposals that generate genomic data. I spent the day attempting to read through some of the policy documents and was struck by the lack of mention of participant access to research data. After digging a bit I found the only mention was in the “NIH Points to Consider for IRBs and Institutions“:

[...] the return of individual research results to participants from secondary GWAS is expected to be a rare occurrence. Nevertheless, as in all research, the return of individual research results to participants must be carefully considered because the information can have a psychological impact (e.g., stress and anxiety) and implications for the participant’s health and well-being.

It will not be surprise to learn that the Personal Genome Project submitted public comments during the the comment period. Among these comments was a recommendation to require “researchers to give these participants access to their personal data that is shared with other researchers.” Unfortunately, this recommendation appears not to have been implemented. As Jason mentioned, we still have a long way to go.

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QS | Public Health Symposium: Doug Kanter’s Healthiest Year

We’ve featured the work of our friend and QS community member, Doug Kanter, many times here on the Quantified Self website and we were excited to have him participate in our Quantified Self Public Health Symposium. Doug is both a toolmaker and self-tracker, focusing primarily on using his experience with tracking his diabetes-related data to inform new tools and methods. In this talk, Doug explains what he learned from diving headfirst into a year-long project of tracking and visualizing all of the data he could gather about his diabetes self-management, his diet and activity, and other important factors. Beyond the wonderful visualizations he shared, Doug helped highlight something many patients and self-trackers are struggling with, the inability to access data easily and the lack of interoperability among data services and devices. We invite you to watch Doug’s wonderful talk below.

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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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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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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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Kevin Krejci: An Update on Tracking Parkinson’s Disease

At our recent Bay Area QS meetup, Kevin Krejci presented a short update about the ongoing self-tracking and treatment projects he’s undergoing as part of living with Parkinson’s Disease. Back in January, Kevin first presented his tracking journey and how he’s using different tools to understand and improve his life. Watch his short talk below to see how he’s progressing.

Continue reading

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Eric Boyd: Tracking My Daily Rhythm With a Nike FuelBand

In 2013 Eric Boyd started using a Nike FuelBand to track his activity. Not satisfied with the built in reporting the mobile and web applications were delivering he decided to dive into the data by accessing the Nike developer API. By being able to access the minute-level daily data Eric was able to make sense of his daily patterns, explore abnormalities in his data, and learn a bit more about how the FuelBand calculated it’s core metrics. Watch Eric’s talk from our 2013 Quantified Self Europe Conference to hear more about Eric’s experience.

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