PatientsLikeMe Selects First Pilot Users for Open Research Exchange™

  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

Business Wire

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,” said Wicks.

RWJFSenior Program OfficerPaul 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,” said

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

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