Now Viewing: Open sourcing

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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Spurring Open Source Health Innovation

Nov 21, 2013, 3:00 PM, Posted by Lori Melichar

Lori Melichar, senior program officer Lori Melichar, senior program officer

I recently learned to Code… in a Day.

Why, you might ask, would a labor economist at a health foundation want to acquire programming skills that didn’t relate to statistical analysis? Well, for one thing, I was curious—I wanted to understand the magic that turns letters and numbers into apps with the power to make our lives easier, and our health better. And as a program officer tasked with funding transformative innovations, I wanted to gain perspective on the world of apps, mHealth and the culture of innovation associated with the Silicon Valley tech scene.

To be clear, here at Pioneer, we’re interested in innovations of all shapes in sizes—not just those that are technical in nature. We’ll take a low-tech approach that truly disrupts business-as-usual over a high-tech incremental improvement any day of the week. That said, considering the volume of proposals we receive that involve creating an app or online platform of some kind, it seemed like boosting my literacy in this area couldn’t hurt. (Though I’m fortunate to have colleagues like Steve Downs, the Foundation’s Chief Technology and Information Officer, to fill in gaps in my technical expertise.)

So I learned to code in a day, and I left the class with an app of my own creation. Even more valuable, I learned about developers’ habits and culture…“the developers’ code,” if you will.  And I saw a lot that I’d like to emulate.

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Pitch Us: The First-Ever Pioneer Pitch Day

Aug 13, 2013, 8:00 AM, Posted by Brian C. Quinn

Brian Quinn, assistant vice president, Research and Evaluation Brian Quinn, assistant vice president, Research and Evaluation

We’re always willing to hear your ideas for how to innovate health and health care—and to change the world in the process. We accept brief proposals through our website 365 days a year. And we read them, every single one, looking for the big idea that has not yet been considered or the seed of an exploration that could lead to that big idea.

On October 16, we’re going to try a little experiment—a new way for you to share your ideas with us: We’ll be hosting our first-ever Pioneer Pitch Day in New York City. Over the course of two hours, eight teams will tell us their vision for how they want to change the world of health and health care—and how they plan to go about doing so. They’ll be peppered with questions from me, my colleagues on the Pioneer team, our grantees and from a few of our friends, including Esther Dyson. Thomas Goetz, the Robert Wood Johnson Foundation’s entrepreneur-in-residence, will be our emcee. (Update: We are excited to announce that Fast Company staff writer Ben Schiller, NPR science correspondent Shankar Vedantam, Games for Health co-founder Ben Sawyer, PatientsLikeMe co-founder and president Ben Heywood, Rhode Island School of Design President John Maeda, and IDEO Life Sciences Chief Strategist Rodrigo Martinez will be joining us as judges. Stay tuned for additional updates.)

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Weighing the Pros and Cons of Making Proposals Public

Aug 8, 2013, 8:00 AM, Posted by Lori Melichar

Lori Melichar, interim team director Lori Melichar, interim team director

“Information wants to be free.” That’s the mantra of Internet culture, which is increasingly indistinguishable from culture at large. What does this cultural shift mean for a foundation seeking to fund innovation? Specifically, what does it mean for Pioneer?

My colleague, Nancy Barrand, and I have been thinking about this a lot lately. Clearly, the existence of this blog, and of our website and various social media channels, are all proof that we share more information outside the walls of this Foundation than we ever did before. But we still keep one part of our process under lock and key: proposal review.

Each year, thousands of organizations submit proposals to RWJF, and only the fraction of them that receive funding are ever shared publicly. This is less a comment on the quality of the ideas than it is on the specificity of our funding strategy, and, of course, the fact that our budget is finite. Increasingly, we’ve wished we could share the ideas we don’t fund with a wider audience, so they could benefit from the collective intelligence of our growing network.

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Listen Up: Why Innovators Need to Listen to Consumers

May 23, 2013, 8:00 AM, Posted by Beth Toner

Beth Toner, communications officer Beth Toner, communications officer

I recently spent the day at the MIT AgeLab, and it was an important reminder of why successful innovators in any field need to listen to the consumer.

I was there to participate in a roundtable discussion on engaging the “older” consumer online (much to my chagrin, I realized that I am in fact part of this demographic). Folks from a variety of for-profit organizations were at the table, along with MIT AgeLab staff conducting and supporting research in this area. I was the only person there from a philanthropic organization.

The presenter line-up was eclectic. To my delight, Sally Okun from Pioneer grantee PatientsLikeMe was there to share her perspective on how PatientsLikeMe helps patients make complex decisions about their health. Courtney Ratkowiak from Proctor & Gamble highlighted that company’s innovative efforts to reach women ages 55 and older who buy beauty products. (I was surprised to learn that most women 55+ don’t own a smart phone.) Mark Duffey, CEO of Everest Funeral Planning, showed how his company makes difficult decision-making easier by going out of his way to make prices clear. (Apparently, the three things women dread purchasing the most are financial services, cars and health care.)

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