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Engaging Patients in Research

Dec 3, 2013, 8:00 AM, Posted by Paul Tarini

What happens when you engage patients in research? That’s a question RWJF is exploring with grants to Sage Bionetworks and PatientsLikeMe to build online, open-source platforms that give patients the opportunity to contribute to and collaborate on research.

Sage Bionetworks’ BRIDGE platform will allow patients to share and track their health data and collaborate on research into diseases and health problems that matter most to them. Three research projects will be piloted on BRIDGE in the coming year, focusing on diabetes, Fanconi anemia and sleeping disorders.

PatientsLikeMe’s Open Research Exchange (ORE) will give researchers and patients a space to work together to develop health outcome measures that better reflect outcomes that are meaningful to patients. After several months building the ORE, PatientsLikeMe is now in testing mode, putting the platform through its paces. But it’s not just an academic exercise. PatientsLikeMe has recruited four researchers to pilot the ORE. These researchers will be providing feedback on the site while working with patients in the PatientsLikeMe network to develop and test an initial set of health outcome measures.

Sage Bionetwork’s Stephen Friend discusses collaboration between patients and researchers

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Behavior Change: The Motivation Bias

Nov 27, 2013, 7:00 AM, Posted by Pioneer Blog Team

Headshot of BJ Fogg BJ Fogg, director, Stanford Persuasive Tech Lab

Each month, What’s Next Health talks with leading thinkers about the future of health and health care. Recently, we talked with BJ Fogg, director of the Stanford Persuasive Tech Lab, to discuss motivation versus ability, and to better understand which matters more in creating long-term change. In this post, Debra Joy Pérez, former assistant vice president for Research and Evaluation at the Robert Wood Johnson Foundation, who is now working with the Annie E. Casey Foundation, shares her impressions of BJ’s model and how it might impact the work of organizations like ours.

By Debra Joy Pérez

There is something magically simple in how BJ Fogg’s Behavioral Model addresses behavior change. When just three elements coincide—motivation, ability and a trigger—behavior change happens.

From my own experience, I can tell you that BJ’s model can work in developing new and healthy habits. I heard from BJ that immediately after he pees, he does push-ups. He is attaching a new habit he wants to create to an old habit he already has. Every time he relieves himself, he is triggered to perform a simple action that has him looking and feeling healthier. Like BJ, I wanted to improve my health (motivation)—specifically, I wanted to drink more water. My trigger was green tea. I drink a lot of it, so after each cup, I remember to fill the empty cup with water. I’m pleasantly surprised when I see that I’m nearing half a gallon by the middle of the day. It's working.

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“An Educated Consumer is Our Best Customer:” Four Things to Know About Transparency In Health Care Prices, Costs and Quality

Nov 26, 2013, 10:14 AM, Posted by Susan Dentzer

Watch our December 6, 2013, FirstFriday Google+ Hangout archive on transparency in health care.

Panic about high health insurance premiums. Fears about high-cost health-care providers being cut out of health plan networks. Worries that the health plans now available through health insurance exchanges won’t cover the care that patients need.

Welcome to the rollout of Obamacare....right?

Actually, with the exception of the new health insurance exchanges, all of the phenomena described above have a long history. Similar concerns were voiced loudly in the late 1980s and 1990s, when “managed care” in health insurance became a dominant force on the health care and health insurance landscape.

What’s amazing to people who lived through both of these eras—then and now—is how little has changed.  

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