1 posts tagged “measure”

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

Posted January 21st, 2015 by

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 the response from the community, and we’re excited to share that one of those projects is very close to being completed.

Tam is living with multiple sclerosis (MS), and she’s been a PatientsLikeMe member for more than 4 years. After her diagnosis and experiences with her doctors not “getting” what pain means to her, Tam decided to create a new tool for anyone who might be experiencing chronic pain. Her idea is to build a measure that can help doctors better understand and communicate with patients about pain.

Watch her video above to learn about her journey and listen to her explain her inspiration behind the new ORE project.

Share this post on Twitter and help spread the word for MS and chronic pain.