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.
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.
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.
Margot Carlson Delogne