Tag Archives: open paths

QS Access: Data Donation Part 1

New sensors are peeking into previously invisible or hard to understand human behaviors and information. This has led to many researchers and organizations developing an interest in exploring and learning from the increasing amount of personal self-tracking data being produced by self-trackers. Even though individuals are producing more and more personal data that could possibly provide insights into health and wellness, access to that data remains a hurdle. Over the last few years a few different projects, companies, and research studies have launched to tackle this data access issue. As an introduction to this area, we’ve put together a short list of three interesting projects that involve donating personal data for broader use.

DataDonors.org
Developed and administed by the WikiLife foundation, the DataDonors platform allows individuals to upload and donate various forms of self-report and Quantified Self data. Data is currently available to the public at no cost in an aggregated format (JSON/CSV). Data types includes physical activity, diet, sleep, mood, and many others.

OpenSNP.org
OpenSNP is an online community of over 1600 individuals who’ve chosen to upload and publicly share their direct-to-consumer genetic testing results ( 23andMe, deCODEme or FamilyTreeDNA) . Genotype and phenotype data is freely available to the public.

Open Paths
Open Paths is an Android and iOS geolocation data collection tool developed by the New York Times R&D Lab. It periodically collects, transmits, and stores your geolocation in a secure database. The data is available to users via an API and data export functions. Additionally, users can grant access to their data to researchers who have submitted projects.

We’ll be expanding this list in the coming weeks with additional companies, projects, and research studies that involve personal self-tracking data donation. If you have one to share comment here or get in touch.

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What We Are Reading

We hope you enjoy this weeks list. Feel free to submit articles, show&tell self-tracking stories, and QS data visualizations. Just email me!

Articles
Why can’t you track periods in Apple’s Health app? by Nat Buckley. With the recent re-release of Apple’s HealthKit enabled self-tracking and personal data system it no wonder that people are taking a long hard look at what data is being excluded. With the popularity of menstruation tracking apps (this app has nearly 30,000 ratings) it’s surprising this was overlooked. This excellent post is a must read on the topic.

Now That Cars Have Black Boxes, Am I Being Tracked? by Popular Science Editors. Questions and concerns about surveillance are becoming more commonplace. As someone who is looking to purchase a car in the next year or so I was happy to see this post come across my stream.

The Quantified Self community, lifelogging and the making of “smart” publics by Aristea Fotopoulou. I love it when people take a thoughtful look at the Quantified Self community and write about their experiences:

For me, the potential of QS for public participation lies in the show and tell meet-ups that constitute a central feature of this community. Meet-ups enable the exchange of stories about the success or failure of lifelogging practices; they allow people to connect and form synergies around common interests, and to explore wider questions such as personal data management and ownership. [...] members touch upon key political issues and create temporary spaces of dialogue: what happens to personal data, who has access to these data (is it private individuals, governments or corporations)? For what purposes (medical research)? And how can these data be interpreted (by algorithms, visualisations) and used to tell stories about people?

Stepping Down: Rethinking the Fitness Tracker by Sara M. Watson. Sara uses her personal journey of recovery from hip surgery to frame an interesting question: Should we trust our fitness trackers to prescribe movement goals?

Show&Tell
Practical Statistical Modeling: The Dreaded After-School Carpool Pickup by Jamie Todd Rubin. Jamie wanted to understand if there was a way he could reduce how much time he spent waiting in line to pick up his son from school. Why not track it and model it!

Bulletproof Diet and Intermittent Fasting: 1.5 Year Results by Bob Troia. Bob takes a deep dive into his data to see if this particular diet is having beneficial health effects. Click for the great data, stay for the wonderful discussion and very, very thorough write-up.

Visualizations


Quotidian Record by Brian House. I’ve been a fan of Brian House since his early days visualizing Fitbit data. I was reminded of this work during a conversation about geolocation data and thought it would be a nice addition to our visualization list.

KMcCurdy_SMVisualizing My Daily Self-Management by Katie McCurdy.

What does my daily medication and self-management look like? How could I visualize this regimen? How can I communicate the ‘burden’ and work of caring for myself?

I decided to draw pictures of the things that I need to do on a daily basis; that way I could show the workshop attendees what my day was like instead of just telling them.

JawboneTimetoEatIt’s Time to Eat by Karl Krehbiel. Karl, a data science intern at Jawbone used the data from their global community of users the determine the likelihood of food and drink consumption during the day. Really fun and interesting visualizations here.

From the Forum
Seeking opinions of diabetic self-trackers for non-profit project
Five Years of Weight Tracking
What Disclaimer should I use when making my personal #quantifiedself data public?

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