Now Viewing: Data and data collection

Building Big Data, One Swab at a Time

Mar 14, 2013, 2:00 PM, Posted by Nancy Barrand

Watch PBS NewsHour's feature, "Researchers Aim to Unlock Genetic Data Goldmine for Vital Medical Information," on the Kaiser biobank to learn more about how Catherine Schaefer, Neil Risch and 200,000 Kaiser members are accelerating the pace of medical research and bringing the future potential of genomics into the here and now.

When the Robert Wood Johnson Foundation launched the Pioneer Portfolio, my colleagues and I asked ourselves what fields might produce the greatest potential game-changers for health and health care. Genomics was at the top of the list. The human genome had been mapped and fantastic discoveries had begun to blossom, but a true era of personalized medicine still seemed too far off.

So we set out to do what Pioneer does best. We explored and learned. We networked.  We asked a lot of questions.  And we began to hunt down ideas.

On March 12, PBS NewsHour did a feature story on one of the big ideas that came out of that process: the world’s largest, deepest, and most diverse “biobank.” It presented a good opportunity to share the backstory. 

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Heritage Open mHealth Challenge: Searching for a Sum Greater Than Its Parts

Mar 4, 2013, 3:14 PM, Posted by Christine Nieves

Christine Nieves Christine Nieves

“Smart” phones are rapidly becoming ubiquitous; almost half of all American adults own one. Every one of those phones has the potential to be a health companion for its owner, providing reminders about pills to take or tips about healthier foods to eat. Phones can also collect valuable health data—such as the quality of the air we breathe or the number of steps we walk. For people with a chronic disease such as diabetes, a smart phone can track the kinds of meals that spike their blood sugar or the side effects of their medications; it can even relay that information back to a doctor, who can then help patients better manage their health.

To date, the major tool for harnessing the power of mobile technology has been the app. Just like there are apps for weather, news, or restaurant reviews, there are apps for health. They can do amazing things, from measuring and monitoring, to imaging and predicting. But, there aren’t just a handful of them—there are thousands! And, that’s where the Heritage Open mHealth Challenge comes in.

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PatientsLikeMe Project Pioneers Use of Outcomes Data That Are Meaningful To Patients

Feb 25, 2013, 12:33 PM, Posted by Pioneer Blog Team

Jamie Heywood Jamie Heywood
Paul Tarini Paul Tarini

RWJF has awarded PatientsLikeMe a $1.9 million grant to create the world’s first open-participation research platform to develop patient-centered health outcomes. The new platform will be linked with the PatientsLikeMe network to help researchers develop health outcome measures that better reflect patients’ experiences with a disease, and assess health and quality of life in ways that matter to patients.

Jamie Heywood, co-founder of PatientsLikeMe, and Paul Tarini, senior program officer of the Pioneer Team at RWJF, share their views on why creating an open-access platform to develop measures that matter to patients could advance meaningful treatments that improve health and advance research.

Why is this a pioneering project?  What makes it novel? 

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Pioneering Idea: Your Patient’s Community Health Needs Assessment on the Desktop

Dec 21, 2012, 10:06 AM, Posted by Ted Eytan

Ted Eytan Ted Eytan

In medical school, we were taught an ahead-of-its-time curriculum called "Community Oriented Primary Care." It looks like now we're going to get to be able to practice it.

When I was with the Project HealthDesign (@PrjHealthDesign) team in Nashville earlier this year (see: A visit to Project HealthDesign and the patient voice, spoken through their observations of daily living | Ted Eytan, MD), we participated in an interesting exercise while wearing silly hats. It involved turning our thinking 180 degrees around about the future of health.

 

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Pioneer Grantee Open mHealth Showcases Work at mHealth Summit 2012

Dec 18, 2012, 9:39 AM, Posted by Pioneer Blog Team

On December 3-5, 2012, Pioneer grantee Open mHealth spread the word about their work at the annual mHealth Summit in Washington, D.C. by hosting a panel session and engaging attendees at RWJF’s exhibit booth. Follow along with this Storify chronicling Open mHealth’s activities at the summit, and learn why their work to integrate apps through an open architecture is what’s next in mHealth.

 

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