Tag: access

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Open Research, Open Data, Open Humans

March 25, 2015

“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…

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Better by Default: An Access Conversation with John Wilbanks

March 10, 2015

John Wilbanks is the Chief Commons Officer for Sage Bionetworks. You may not recognize John’s name or the name of his organization, but after today, you may want to commit it to memory. On March 9, 2014 Tim Cook introduced us to the idea of ResearchKit and then turned it over to Jeff Williams who described the new…

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QS Access: Personal Data Freedom

February 11, 2015

We are happy to welcome this guest post by Madeleine Ball. Madeleine is the Senior Research Scientist at PersonalGenomes.org, co-founder of the upcoming Open Humans project, and the Director of Research at the Harvard Personal Genome Project. She can be found online @madprime. The digital trails we create are becoming thick and personal. Increasingly, people choose to collect meaningful data…

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QS Access: Precision, Patients, and Participation

January 30, 2015

This morning President Barack Obama announced a new Precision Medicine Initiative, a key $215 million piece of the proposed 2016 budget. Much has been written since last week’s State of the Union, when this initiative was first mentioned by President Obama. In brief, the initiative is an investment in new programs and funding initiatives at…

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QS Access: Data Donation Part 1

January 27, 2015

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…

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QS Access: Self-Report & Quantified Self in Health Research

January 23, 2015

As part of our new Access channel we’re going to highlight interesting stories, ideas, and research related to self-tracking data and data access issues and the role they take in personal and public health. We recently found this expert report, published in the International Journal of Obesity, that tackles issues with the data researchers rely on for…

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How To Access & Export MyFitnessPal Data

January 13, 2015

MyFitnessPal is one of the leading dietary tracking tools, currently used by tens of millions of people all around the world to better track and understand the foods they consume every day. Their mobile apps and online tools allow individuals to enter foods and keep track of their micro- and macro-nutrient consumption, connect additional devices…

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Access Matters

September 4, 2014

Someday, you will have a question about yourself that impels you to take a look at some of your own data. It may be data about your activity, your spending at the grocery store, what medicines you’ve taken, where you’ve driven your car. And when you go to access your data, to analyze it or…

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

September 4, 2014

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…

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We Need a Personal Data Task Force

December 11, 2013

Earlier today John Wilbanks sent out this tweet: Help me build a @23andme health data export app. $500 reward. Details at http://t.co/dC2ZX1F2OK — John Wilbanks (@wilbanks) December 11, 2013   John was lamenting the fact that he couldn’t export and store the genome interpretations that 23&Me provides (they do provide a full export of a user’s…

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APIs: What Are The Common Obstacles?

June 7, 2013

Today’s guest post come to us from Eric Jain, the lead developer behind Zenobase and a wonderful contributor to our community.  At last month’s QS Europe 2013 conference, developers gathered at a breakout session to compile a list of common obstacles encountered when using the APIs of popular, QS-related services. We hope that this list…