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 F. Lopes. 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
Catha Mullen has a long history with tracking, primarily from her experience as an elite-level distance runner. In this talk, presented at the Bay Area QS Meetup, she describes how tracking and data analysis helped her understand and improve her financial health.
In our first episode of QS Radio we hit the ground running with a great pair of interviews and some super interesting news and discussion about exciting self-tracking projects.
In our show&tell segment, we hear from Shannon Conners, a self-tracking enthusiast who’s been learning amazing things from tracking her diet, exercise, and weight for over four years. Jessica Richman, CEO and co-founder of uBiome, joins us for a short Toolmaker Talk where we learn about the importance of the microbiome and citizen science. To wrap up, Ernesto and Steven share a few interesting tech and self-tracking stories in a segment we call “What We’re Reading.”
We hope you enjoy this inaugural episode. Make sure to check the show notes below for links to items we discussed.
You can find out more about Jessica Richman and uBiome on their website.
What We’re Reading
Anna Nicanorova is a data scientist. Starting in 2013 she started making an annual report, but what stuck by how difficult it was to access her own data she was collecting through different apps and services. Early this year she put together her 2014 annual report based on a few different tools and using If This Then That as a data backup service. In this short talk, presented at the New York QS meetup group, Anna describes her process, her data, and what she learned from examining a year in numbers.
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.
We are excited to welcome Valerie Lanard as a presenter our upcoming QS Conference & Activate Expo. Like many in our community, Valerie has been tracking a variety of her health and fitness data and was pleased to find out “that there others like her” when she discovered the Quantified Self. Currently Valerie is working on Gigabody.com, a streaming fitness video service designed to help with regular exercise. She also has a keen interest in habits, health & fitness tracking, wearable devices, lifelogging.
At the QS15 Conference Valerie will be talking about her fascinating project to quit TV for thirty days. In August of 2014, Valerie committed to quitting TV and focused on how her environment and triggers reinforced a behavior she felt “locked into.” In her show&tell talk she will be sharing her process, what ended up replacing all her TV time, and lessons she learned about herself when she was able to break the habit.
We also spoke with Valerie about what she’s looking forward to at the conference and she mentioned she’s excited to see new tools and devices as well as the opportunity to meet new QS community members:
I cannot wait to see the new crop of devices and QS companies at the conference – I feel like a kid in a candy store every year. But I’m just as excited to talk about the latest health tracking APIs, and meet smart, like-minded folks from the community. Come say hi!
If you’re interested in meeting and learning from interesting and engaged people like Valerie then register now for the QS15 Conference & Expo.
Today, we are participating in the “Data and Innovation at the Climate-Health Nexus” panel hosted by the White House Office of Science and Technology Policy. When we’ve spoken to people about this meeting the reaction we tend to receive is, “What does Quantified Self have to do with climate change?” It’s a valid question, and one we hope to answer during the panel. Today we wanted to take some time here to talk about why we’re a part of this important conversation.
It’s no surprise that data and data collection is becoming a part of the normal course of our everyday lives, from the data we choose to collect about our health and wellness to the so-called “data exhaust” we’re creating as we use different technological systems. The practice of self-tracking, collected data about yourself to answer interesting questions or help change behavior, has often been linked to narcissism or navel gazing. We know from our experience interacting with a worldwide community of self-trackers that this isn’t the case. Individuals who track, analyze, visualize, and learn from their own data also tend to do something else: share it. You just have to take a peek at our over 750 show&tell videos to see that sharing experiences, techniques, and outcomes is a core component of our work and our community. It’s the reason we hold conferences, support over 100 meetups around the world, and share on this website.
We also know that data is powerful. It can help us understand ourselves, but also the world around us. We’ve been watching closely as new citizen science, one-off projects, and commercial toolmakers have started to incorporate ways to sense and measure the personal and local environment. From air quality sensors integrated into in-home video monitors to crowdsourced DIY environmental sensing devices – we’re beginning to see the power of data for understanding the environment around us, and perhaps more importantly, how the environment plays a role in the health and wellness of our communities. A great example of this comes from our friends at Propeller Health. Recently they announced the launch of AIR Lousiville, a “first-of-its-kind data-driven collaboration among public, private and philanthropic organizations to use digital health technology to improve asthma.” By combining air quality data with geolocated asthma inhaler use data they hope to better understand and positively impact their local environment and reduce the burden of asthma in the Louisville community.
This is just one example of individuals coming together as a community to generate and contribute data about themselves, their environment, and their health to drive a much needed conversation. A conversation about the complex, and important, relationship between the environment and health. We’re hoping to see more and, to that extent, we’re excited to announce that starting at our 2015 Quantified Self Public Health Symposium we’ll be officially launching, in collaboration with with the U.S. Environmental Protection Agency, Personal & Community Environmental Data Challenges, calling on researchers and companies making wearables, sensing, data-visualization, and digital health-tools to join a national conversation about the importance of gaining a more detailed view of environmental impacts on health. This challenge is just one in a great list of commitments from leading companies and institutions designed to advance the Obama Administration’s Climate Data Initiative.
We invite you to learn more about our challenge announcement and our participation in the symposium on Data and Innovation at the Climate-Health Nexus by reading our brief press release here.
You can also learn more about national initiatives, programs, and newly released climate data from the following Fact Sheet: Administration Announces Actions To Protect Communities From The Impacts Of Climate Change
Update: The video from the panel is up and can be found here. The panel actually starts an hour and 19 minutes in to the video.
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
Today we are excited and honored to announce that Christopher Snider has joined QS Labs as our Associate Editor. In the run up to our yearly Quantified Self Public Health Symposium, Christopher will be assisting our efforts to grow our QS Access editorial channel in support of our mission to explore the role of data access for personal and public health benefit.
Christopher comes at self-tracking from a more “old school” perspective, living with type 1 diabetes since 2002. He believes in the power of storytelling, that the stories we share strengthen communities like Quantified Self, and that every story is worth telling no matter how ordinary it may appear to be on the surface. We invite you to welcome Christopher and get to know him a bit by exploring a few of his many online efforts.
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.
On June 18-20 we’ll be hosting the QS15 Conference & 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.
We 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.
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 & Expo. Register now!