PatientsLikeMe selects first pilot users for Open Research Exchange™

Researchers and Patients to Test New Measures for Hypertension, Treatment Burden, Appetite and Diabetes, Primary Palliative Care

CAMBRIDGE, Mass.— August 13, 2013—PatientsLikeMe has named the first four researchers and teams who will pilot test its new Open Research Exchange™ (ORE) platform. Supported by a $1.9 million grant from the Robert Wood Johnson Foundation, ORE was created to help researchers design, test and openly share new ways to measure diseases and health issues. ORE involves patients at each step of the measure development process, enabling PatientsLikeMe’s 200,000+ members to guide and contribute to research so that it better reflects their needs.

The four researchers, whose work will be shared in an open library of patient-reported instruments and health measurements, are:

  • Gerald Arnold, Ph.D., M.P.H. and Rebecca Baranowski, M.Ed., M.S. of American Board of Internal Medicine (ABIM). The ABIM will create a primary palliative care questionnaire to help physicians assess how they work with seriously ill patients and their families/caregivers to manage symptoms and plan their care throughout their illnesses, well before they are at the end of life.
  • Tamara Kear, Ph.D., R.N., C.N.S., C.N.N. of Villanova University and Fresenius Medical Care. Kear will create an instrument for patients with high blood pressure to capture how they are doing between visits with their practitioner. It will also identify barriers in hypertension management, one of the factors prompting a rise in kidney disease.
  • William Polonsky, Ph.D., C.D.E. of the Behavioral Diabetes Institute. Polonsky is interested in developing a measure for diabetes patients that shows the impact of certain diabetes medications on satiety, or the feeling of being full.
  • Dr. Phillippe Ravaud, M.D., M.Sc., Ph.D. and Dr. Thi Tranviet, M.D. and Ph.D. candidate of the METHODS Research Team in Paris. They will validate a French-based questionnaire among English-speaking patients with multiple chronic conditions. The questionnaire measures the level of burden imposed by prescribed treatments so that providers know when their treatment regimes are too much for patients to handle.

Podcasts from and full details on the researchers are available at

PatientsLikeMe Research and Development Director Paul Wicks, Ph.D. said a wide range of researchers applied to the program after the company issued a call for participation during the International Society for Pharmacoeconomics and Outcomes Research (ISPOR) conference in May. “We were astounded at the depth and breadth of measures that people want to create. We’re more confident than ever that our open approach and environment, and its link to a large and very active patient network, makes ORE the best platform for creating completely new ways to measure health.“

RWJF Senior Program Officer Paul Tarini said ORE’s focus on improved measurement will lead to improved care. “ORE has the potential to not only break new ground in the way research is conducted, but to help patients capture and report on outcomes that are much more meaningful to them.”

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 35 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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