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
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 http://www.openresearchexchange.com.
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.
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,” said Tarini.
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 www.patientslikeme.com
or follow us via our blog,
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 www.rwjf.org.
Follow the Foundation on Twitter www.rwjf.org/twitter
or Facebook www.rwjf.org/facebook.
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