2 posts tagged “ISPOR”

PatientsLikeMe selects first pilot users for Open Research Exchange™

Posted August 13th, 2013 by

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 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.“

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® (www.patientslikeme.com) 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, 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 www.rwjf.org. Follow the Foundation on Twitter www.rwjf.org/twitter or Facebook www.rwjf.org/facebook.


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

Posted May 20th, 2013 by

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 (www.openresearchexchange.com). 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® (www.patientslikeme.com) 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 www.patientslikeme.com 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 www.rwjf.org. Follow the Foundation on Twitter www.rwjf.org/twitter  or Facebook www.rwjf.org/facebook