Feb 25, 2013, 12:33 PM, Posted by
Pioneer Blog Team
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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Apr 12, 2012, 2:02 AM, Posted by
Pioneer Blog Team
Last month’s 12gurus: Health conference brought “resources and innovation to the forefront” by convening the world’s most accomplished leaders in health care and medicine to share new ideas that can improve the health care system. The conference focused on how to enable innovation through research, data-sharing, and mobile technology to pave the way for future breakthroughs in health care.
Three former and current Pioneer grantees attended the invitation-only conference in New York City and gave 18-minute-or-less “TED.com-style” talks:
- Scott Johnson, president and founder of the Myelin Repair Foundation, presented the session, “Breaking from the Past to Breakthrough to Cures-Accelerated Collaboration Model.” Learn more about Scott’s recent honor as the recipient of the prestigious Gordon and Llura Gund Leadership Award from Research!America.
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Mar 14, 2012, 4:28 AM, Posted by
Tonight in Washington, Scott Johnson, the CEO of the Myelin Repair Foundation (MRF), will be honored as the recipient of the prestigious Gordon and Llura Gund Leadership Award fromResearch!America. The Pioneer Portfolio congratulates Scott and the MRF on what has been truly pioneering and inspiring work.
Scott, an engineer by training, is a Silicon Valley entrepreneur who has lived with multiple sclerosis since 1976. His keen desire to improve treatment led him to start MRF in 2004. Though RWJF does not fund biomedical research nor focus on specific diseases, we saw MRF’s Accelerated Research Collaboration model as pioneering a new approach to biomedical research – one that had the potential to speed the process of discovery.
With the help of RWJF’s support, MRF piloted the Accelerated Research Collaboration model. The model re-engineers the painfully slow and siloed research enterprise into a collaborative venture to accelerate discovery and move more potential candidates into the pipeline for development of new treatments. From 2005 to 2008, MRF researchers produced 50 peer-reviewed articles, pinpointed 19 new pathways and therapeutic targets for myelin repair, identified 24 new tools for neurological disease research, and filed applications for nine patents, with eight additional applications in the works.
In the process, MRF’s work shifted the field of MS research to focus on myelin repair as the more promising avenue to slow progression of the disease and develop treatments. But as significantly, his fresh view of the biomedical research process – based on how it can and should work, not how it has been traditionally conducted – will shift the future.
The RWJF Pioneer Portfolio is proud to have supported such innovative and life-changing work, and we congratulate Scott Johnson on receiving this much-deserved honor.