PatientsLikeMe Calls For Researcher Participation in New Open Research Exchange™ Platform

Company Names Scientific Advisory Board for World’s First
Open-Participation Research Platform for Patient-Centered Health Outcome Measures

CAMBRIDGE, Mass.— May 20, 2013—Today, PatientsLikeMe announces an open call for medical researchers to be among the first pilot users of its Open Research Exchange™ (ORE) platform ( ORE puts patients at the center of the clinical research process and allows researchers to pilot, deploy, share, and validate new ways to measure diseases within PatientsLikeMe’s community of more than 200,000 members. The new platform and call for participation is being spotlighted today at the International Society for Pharmacoeconomics and Outcomes Research (ISPOR) conference in New Orleans.

Supported by funding from the Robert Wood Johnson Foundation, PatientsLikeMe’s ORE is available for free to any researcher who wants to:

  • Leverage new, specialized tools to quickly design and field measures based on patient questionnaires;
  • Rapidly test new measures with real patients in multiple iterations, and get feedback on their instrument development;
  • Be among the first to browse and contribute to the world’s only open library of patient-reported instruments and health measurements.

PatientsLikeMe Research and Development Director Paul Wicks, Ph.D. says, “We’re excited to move to the next phase of this important project, and to create an open environment where people who are interested in advancing medicine can easily collaborate on health outcome measures.”

The company has also named an ORE Scientific Advisory Board, a group Wicks says will lend scientific, academic, industry, and patient expertise as the platform develops. The board will also recommend and introduce participants to additional technologies and partners to accelerate their work. “Our board includes some of the most renowned and respected minds in scientific research. Together, they bring the academic experience, clinical perspectives, and patient focus that will be so instrumental to ORE’s users.”

Scientific Advisory Board members, whose full profiles can be found here, are:

  • Ethan Basch, M.D. of the University of North Carolina School of Medicine, Lineberger Comprehensive Cancer Center;
  • Patricia Brennan, R.N., Ph.D., of the University of Wisconsin-Madison School of Nursing and College of Engineering;
  • David Cella, Ph.D. of Northwestern University’s Feinberg School of Medicine, Department of Medical Social Sciences;
  • Ari Gnanasakthy, Head of Patient Reported Outcomes at Novartis;
  • Hugh Hempel, Co-Founder, Solution Therapeutics and Parent Advocist and Founder of The Addi and Cassi Fund;
  • Erin Holve, Ph.D., Senior Director of AcademyHealth;
  • Bryce Reeve, Ph.D., of University of North Carolina’s Gillings School of Global Public Health;
  • Sara Riggare, Ph.D. student at the Karolinska Institutet;
  • Sharon Terry, President and CEO of Genetic Alliance;
  • John Wilbanks, Chief Commons Officer at Sage Bionetworks and Founder of Consent to Research.

Dr. Basch says that PatientsLikeMe has fundamentally changed the landscape around patient self-reporting by proving that people “are willing and able to volunteer information that can be aggregated to provide valuable safety and effectiveness data. The opportunity for new questionnaires to be tested through online communities is exciting and novel, and is an example of investigator-patient partnering that can increase the efficiency and person-centeredness of research.”

About PatientsLikeMe
PatientsLikeMe® ( is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers and nonprofits develop more effective products, services and care. PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 30 peer-reviewed research studies. Visit us at or follow us via our blog, Twitter or Facebook.

About Robert Wood Johnson Foundation
The Robert Wood Johnson Foundation focuses on the pressing health and health care issues facing our country. As the nation’s largest philanthropy devoted exclusively to health and health care, the Foundation works with a diverse group of organizations and individuals to identify solutions and achieve comprehensive, measurable, and timely change. For 40 years the Foundation has brought experience, commitment, and a rigorous, balanced approach to the problems that affect the health and health care of those it serves. When it comes to helping Americans lead healthier lives and get the care they need, the Foundation expects to make a difference in your lifetime. For more information, visit Follow the Foundation on Twitter  or Facebook

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