Patient generated data
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Why small data, data donation should be healthcare’s future | mobihealthnews

Why small data, data donation should be healthcare’s future | mobihealthnews | Patient generated data | Scoop.it

One of the themes of this year’s TEDMED conference was data liberation, kicked off by two speakers: Deborah Estrin, a computer scientist at Cornell Tech and Amy Abernethy, a cancer researcher at Duke Clinical Research Center. Estrin and Abernethy each talked about a rich source of data that could revolutionize healthcare, but isn’t currently being tapped; Estrin talked about the “small data” generated by our use of digital devices and Abernethy explored the potential of “data donation.”

Deborah Estrin, one of the founders of Open mHealth, spoke at TEDMED not just about mobile health applications, but about how all mobile applications can serve healthcare, by generating what she called “small data.”

“We do have special devices designed for self-tracking, like our Fitbits,” Estrin said in her talk. “I’m talking about a wider array of data we generate implicitly. We’re continuously generating digital breadcrumbs in the services we interact with.”

Estrin described how digital devices — not just smartphones but websites, feature phones, and television cable boxes — already track data about how much we use them and report it to companies, who use it to optimize advertising and consumer engagement.

“They capture and analyze data extensively, but they don’t bring that data back to the person who generated it,” she said. “There’s no way for us to gain access to that data. There should be, because there’s a lot that I can learn about my personal health from my digital behavior.”

Estrin acknowledged the concept is similar to Ginger.io’s passive monitoring software and that company’s idea of a “check engine” light for your health. Estrin said she prefers to think of it as a “social pulse,” which can reveal more information about us than a single visit to the doctor — for which many people will put their best foot forward, rather than acting typically.

“When I think back to my father’s last few years of life, I can identify signals that would have shown up in his small data, in his social pulse,” she said. “He stopped checking email. His patterns around the neighborhood changed. These things didn’t show up in his regular visits to the cardiologist. The attending doctor didn’t see anything atypical. There was nothing in his vital signs or his electronic health record, but it would have shown up in his social pulse.”

Abernethy talked about a different untapped data source — individual patients’ data. For example, a memorable patient of hers wanted to donate a piece of her tumor to help map out genetic predispositions to melanoma. Abernethy spoke about the need for a data donation infrastructure, perhaps partly modeled after the successful infrastructure we have now for blood donation.

“The blood bank makes great use of every component of my blood. When I need blood, I trust there is a system that will come to my rescue. And when a lot of blood is needed, we know how to band together and donate en masse,” she said. “We understand there’s a societal institution that supports the donation of a precious resource for universal good.”

And there’s one big difference between data and blood, when it comes to donation.

“Data is a non-depletable resource, and the more we make use of it, the more valuable it becomes,” Abernethy said. “We need to give this data a second life.”


Via Valeria Duflot, Art Jones
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Art Jones's curator insight, April 19, 2013 10:48 AM

Innovate to give us access to all of the data we generate each day, there is a lot that we can learn about managing our personal health and wellness thru analysis of that data.

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Get a peek at the 6 best TEDMED 2013 talks (video)

Get a peek at the 6 best TEDMED 2013 talks (video) | Patient generated data | Scoop.it
Watch excerpts of 6 TEDMED 2013 talks including those from Jonathan Bush and ZDOGGMD.

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Infographic: The Impact of Quantified Self Tracking

Infographic: The Impact of Quantified Self Tracking | Patient generated data | Scoop.it

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A Medically-Supervised Self-Tracking Program Might Work Better for Migraines #quantifiedself

A Medically-Supervised Self-Tracking Program Might Work Better for Migraines #quantifiedself | Patient generated data | Scoop.it
There's a growing body of research supporting the methodologies we use in our medically supervised Quant Coach Program here at My Doctor Medical Group. If you get violently ill every time you go on...

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The quantified self | Research

The quantified self | Research | Patient generated data | Scoop.it
Consumers now have the means to collect huge amounts of data about themselves, says GfK’s Colin Strong. Might they be willing to share it with market researchers?

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Want to Lose Weight? Leave it Up to Your Smartphone | TIME.com

Want to Lose Weight? Leave it Up to Your Smartphone | TIME.com | Patient generated data | Scoop.it
Researchers find using a smartphone app to shed pounds may help dieters stay on track.

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The Personal Trainer of the Future | Bionic.ly

The Personal Trainer of the Future | Bionic.ly | Patient generated data | Scoop.it

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How crowds, not doctors or supercomputers, could diagnose rare diseases

How crowds, not doctors or supercomputers, could diagnose rare diseases | Patient generated data | Scoop.it

Startup CrowdMed is showing that the collective intelligence of the crowd can be a powerful tool in getting to the bottom of medical mysteries. 

When it comes to serious medical conditions, you probably want a doctor – or at least a medically trained supercomputer – delivering your diagnosis. But CrowdMed, a startup launched in public beta at TEDMED on Tuesday, is showing that the collective intelligence of the crowd can be just as good at getting to the bottom of medical mysteries.

For patients hoping to uncover the causes behind frustrating or painful symptoms, doctors and specialists have long been the most trusted resources.  Supercomputer Watson, predictive modeling techniques and other kinds of artificial intelligence are increasingly revealing their diagnostic power. But CrowdMed co-founder Jared Heyman believes there’s a third option that’s not getting the attention it deserves.


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La Cura, an Open Source Cure for Cancer, at TEDMED

La Cura, an Open Source Cure for Cancer, at TEDMED | Patient generated data | Scoop.it

Salvatore will be at TEDMed 2013 to tell the story of “La Cura”, a global art performance about the opportunity to transform our societies to become more active, aware, caring human beings by reclaiming information and knowledge, and by feeling the desire to be part of a society whose well-being truly depends on the well-being of all of its members.


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Navigating the Legal Issues in mHealth & Telemedicine: Tricky but Not Impossible

Navigating the Legal Issues in mHealth & Telemedicine: Tricky but Not Impossible | Patient generated data | Scoop.it
In preparation of Health:Refactored, our code and design focused conference taking place May 13 - 14, we sat down with Scott Edelstein, Partner at Squire S

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Report: Physicians Embrace Patient Self-Tracking

Report: Physicians Embrace Patient Self-Tracking | Patient generated data | Scoop.it
Healthcare Informatics Magazine | Health IT | Information Technology,Health care information technology & IT strategy news for CIOs, CMIOs & clinical informaticists. Learn about EMR EHR, ARRA HITECH, wireless technologies & meaningful use policy.
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Kinsa Smart Thermometer: a simple tool to track and stop the spread of disease

Kinsa Smart Thermometer: a simple tool to track and stop the spread of disease | Patient generated data | Scoop.it
Imagine what we could do if we knew what illnesses were going around before they affected us. A smarter device that starts a movement to be healthier, together.

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The best digital health app is conversation

The best digital health app is conversation | Patient generated data | Scoop.it
Although our attention may be distracted from time to time by a health-related smartphone or tablet app, a health tracking device, a quantified self peripheral, or some other piece of shiny, soon-t...

Via Art Jones
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