Needed: Standardized outcome measures for patient-generated data

Needed: Standardized outcome measures for patient-generated data 150 150 Biomedical & Health Informatics (BHI)

In order to conduct meaningful clinical trials, it’s important to have solid metrics for tracking disease trajectories and patient experiences. Developing these patient outcome measures is the goal of PatientsLikeMe’s new open-participation research platform, funded by a $1.9 million grant from the Robert Wood Johnson Foundation’s Pioneer Portfolio.

PatientsLikeMe President and co-founder Ben Heywood said that having good patient outcome measures, and seeing them as widely used as possible, is a huge boon for disease research.

“We’re not measuring pain in 45 different ways unless we need to,” he said. “One of the goals we have is a unified medical framework to think about that disease more broadly.”

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