2 posts tagged “Wood”

PatientsLikeMe Develops Patient and Scientific Advisory Boards

Posted September 17th, 2014 by

Company Forms First Member-Based Team of Advisors,
Names New Participants to ORE Scientific Advisory Board

CAMBRIDGE, Mass.—September 17, 2014—PatientsLikeMe has formed its first-ever, patient-only Team of Advisors to give feedback on research initiatives and create new standards that will help all researchers understand how to better engage with patients. The company also named three new members to the Scientific Advisory Board for Open Research Exchange (ORE), a PatientsLikeMe platform where researchers design, test and share new measures for diseases and health issues. ORE was created with support from the Robert Wood Johnson Foundation.

A long-time advocate for the patient voice in medical research, PatientsLikeMe posted an open call for the patient-led Team of Advisors in its member forums and was overwhelmed with applications. “Our members are at the heart of our pioneering approach to research, and they’re very focused on sharing their experience to improve medicine,” said Executive Vice President of Marketing and Patient Advocacy Michael Evers. “Now their voice will extend even further as we continue to revolutionize the way that healthcare is developed and delivered.”

Team members are representative of the PatientsLikeMe community at large and include veterans, nurses, social workers, academics, and advocates. They range in age from 32 to 67 years old, and two thirds are female. They are also living with a cross section of conditions, including amyotrophic lateral sclerosis (ALS), attention deficit disorder (ADD), bipolar II, epilepsy, Fabry’s disease, fibromyalgia, lupus, major depressive disorder (MDD), multiple sclerosis and Parkinson’s disease. Members named to the team include: Letitia Browne-James, Emilie Burr, Lisa Cone-Swartz, Charles DeRosa, Amy Fees, Geof Hill, Dana Hunter, Rebecca Lorraine, Kitty O’Steen, Steve Reznick, Karla Rush, and Deborah Shuman. Bryan Kincaid, an initial member of the team living with idiopathic pulmonary fibrosis (IPF), passed away last month. “The data that Bryan shared on his condition and his contributions to the team live on and will continue to have lasting impact,” Evers said.

The Team of Advisors has already met in person and will spend 12 months providing feedback to PatientsLikeMe’s research team. As part of their work, they will develop and publish a guide that outlines standards for how researchers can meaningfully engage patients throughout the research process. Amy Fees, who is living with Fabry and lupus, said: “I feel encouraged that the particular people chosen for this team share a passion for making something more out of their diseases than an affliction and a curse.”

PatientsLikeMe also added three advisors to its ORE Scientific Advisory Board. The group was formed in 2013 to lend scientific, academic, industry, and patient expertise to ORE. New advisors include:

  • Dr. Helen Burstin, Chief Scientific Officer of The National Quality Forum;
  • Eugene Nelson, Professor of Community and Family Medicine and Director of the Dartmouth Institute’s Population Health Measurement Program;
  • Ken Wallston, Professor of Psychology in the School of Nursing, Vanderbilt University.

Information on all ORE Scientific Advisory Board members is available at https://www.openresearchexchange.com/advisors.

About ORE
PatientsLikeMe’s Open Research Exchange (ORE) was launched in 2013 as an online hub 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 members to guide and contribute to research so that it better reflects their needs. ORE is supported by grants from The Robert Wood Johnson Foundation.

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. With more than 250,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 50 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contact
Margot Carlson Delogne
PatientsLikeMe
+1 781.492.1039
mcdelogne@patientslikeme.com


PatientsLikeMe invites patients to lead research projects on Open Research Exchange

Posted March 29th, 2014 by

New $2.4 Million Grant from the Robert Wood Johnson Foundation Supports Two Patient-Led Projects in 2014 to Develop, Test and Validate Patient-Reported Outcomes

CAMBRIDGE, Mass.—March 27, 2014—Expanding on its mission to put patients at the center of clinical research, PatientsLikeMe today announced that patients can now apply to lead the development of new health outcome measurements using the company’s Open Research Exchange™ (ORE) platform. This call for participation is a way for people living with disease to become the researcher, and to use their own and others’ experiences to create new health measures that are more meaningful, helpful, and relevant.

ORE was launched in 2013 as an online hub for the development of patient-reported outcomes (PROs)—measures used by clinicians to gauge health, disease severity, and quality of life. Since then, thousands of PatientsLikeMe members have given researchers feedback on measures relating to hypertension, treatment burden, diabetes and appetite, and primary palliative care. There were six pilot studies fielded on ORE last year and, while response goals varied from study to study, on average researchers using ORE collected 100 percent of their required responses in less than a week’s time. PatientsLikeMe’s Vice President of Innovation Paul Wicks said that’s far faster than the average 6-12 months it can take to gather similar data via in-person meetings or telephone and web-based questionnaires.

“We’re only beginning to see how ORE can simplify and speed up the research process, and how our members’ experience with more than 2,000 conditions can help researchers more clearly hear the patient voice,” Wicks said. “Now, we’ll be able to work alongside patients as they shape the next generation of research tools and lead future advancements in the research process.”

The Robert Wood Johnson Foundation (RWJF), whose 2013 grant of $1.9 million funded the platform’s start, will accelerate ORE’s innovative approach to developing measures with an additional $2.4 million grant.

“We are eager to invest in innovation that explores how to put patients more firmly in the driver’s seat of their care and of discovery in medicine,” said RWJF Senior Program Officer Paul Tarini. “We’re excited to see the potential impact that patients can have in clinical care and research with ORE’s new phase.”

Patients who want to ensure research goes in a direction that addresses their needs and concerns and who have an idea for a new measure are invited to apply at https://www.openresearchexchange.com/patients.

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. With more than 250,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 40 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook. 

About the Robert Wood Johnson Foundation

For more than 40 years the Robert Wood Johnson Foundation has worked to improve the health and health care of all Americans. We are striving to build a national culture of health that will enable all Americans to live longer, healthier lives now and for generations to come. For more information, visit www.rwjf.org. Follow the Foundation on Twitter at www.rwjf.org/twitter or on Facebook at www.rwjf.org/facebook.