Open Research Exchange

RWJF Awards Grant to PatientsLikeMe to Develop New Measures for Healthcare Performance

Patient Network to Work with the National Quality Forum to Ensure Patients Drive Healthcare Value   CAMBRIDGE, MA., December 8, 2015—PatientsLikeMe has been awarded a $900,000 grant from the Robert Wood Johnson Foundation (RWJF) to help jumpstart changes that will amplify the patient voice in the measurement of healthcare performance. A portion of the grant funds […]

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Patients as Partners: Hallucinations and Parkinson’s disease questionnaire results

It’s time for another Patients as Partners post, and today, we’re happy to share the results of the Hallucinations and Parkinson’s disease questionnaire. In March 2014, more than 500 PatientsLikeMe members living with Parkinson’s disease (PD) took part in an Open Research Exchange (ORE) questionnaire about their condition. They worked with Dennis Chan and Ruth

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PatientsLikeMe member Tam builds first-ever ‘by patients, for patients’ health measure on the Open Research Exchange

Back in March last year, we shared on the blog about a new grant from the Robert Wood Johnson Foundation that would help support two patient-led projects on our Open Research Exchange (ORE) , a platform that brings patients and researchers together to develop the most effective tools for measuring disease. We were overwhelmed by

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2014 recap – a year of sharing in the PatientsLikeMe community

Another year has come and gone here at PatientsLikeMe, and as we started to look back at who’s shared their experiences, we were quite simply amazed. More than 30 members living with 9 different conditions opened up for a blog interview in 2014. But that’s just the start. Others have shared about their health journeys

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PatientsLikeMe Develops Patient and Scientific Advisory Boards

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

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PatientsLikeMe and Actelion to develop new patient-reported measure for mycosis fungoides-type cutaneous T-cell lymphoma (MF-CTCL)

Patients To Share Their Experiences, Help Researchers Better Characterize Disease And Develop Treatment Strategies  CAMBRIDGE, Mass.—August 5, 2014—PatientsLikeMe and Actelion Ltd. (SIX: ATLN) are partnering in a research initiative to create a new patient-reported outcomes tool for the rare form of non-Hodgkin’s lymphoma called MF-CTCL. The collaboration will leverage PatientsLikeMe’s Open Research Exchange (ORE), an

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Patients as Partners: Managing High Blood Pressure questionnaire results

In this installment of our Patients as Partners blog series, we’re sharing results from the High Blood Pressure Management, Adherence, Attitudes and Health Behavior Instrument – whew, that’s a mouthful! Doctors and nurses can use the instrument to better understand how people manage high blood pressure at home, and can help everyone learn more about

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Patients as Partners: The Perceived Medical Condition Self-Management Scale questionnaire results

Back at the beginning of April, we launched a new blog series called Patients as Partners that highlights the results and feedback PatientsLikeMe members give to questionnaires on our Open Research Exchange (ORE) platform. This time around, we’re sharing the results of the Perceived Medical Condition Self-Management Scale (PMCSMS), a health measure that looks at

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Patients as Partners: The WHYSTOP Scale questionnaire results

We’re really excited to launch a new series here on the blog called Patients as Partners. The series will highlight the results and feedback that PatientsLikeMe members give on questionnaires from our Open Research Exchange (ORE) platform. What’s ORE all about again? PatientsLikeMe’s ORE platform gives patients the chance to not only check an answer

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