Cambridge, Mass.—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 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 the Open Research Exchange 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.