PatientsLikeMe Research

PatientsLikeMe is a clinical research platform that provides real-world, real-time insight into thousands of diseases and conditions. Our members have generated more than 35 million data points about disease, creating one of the largest repositories of patient-reported, cross-condition data available today. Their data have helped our researchers to refute traditional randomized clinical trials, model multiple diseases, validate quality measures, shed new light on medication adherence, and add and validate patient reported outcomes. They have also been used with clinicians to illuminate the patient journey, and played a pivotal role in research partnerships with the world’s top 20 pharmaceutical companies, federal regulatory agencies, research institutions and nonprofit organizations.

Featured Research

  • 5/12/16

    While data gathered on PatientsLikeMe has been used for a variety of purposes, questions remain about the quality of information gathered in this new way. Data collected online in other contexts such as online restaurant reviews may be subject to faking, so how can we be confident that patients are who they say they are? In this study we were able to link 94% of respondents to insurance claims using linking methods, thereby increasing confidence in the data through methods that maintain

  • 5/7/16

    In this site-wide survey of almost 4,000 PLM members we described some of the challenges faced by a subset of dissatisfied patients including difficulty setting treatment goals with their physician and getting enough time with their healthcare professionals. By sampling across different conditions we could also identify those conditions where patients appeared relatively disempowered such as fibromyalgia or chronic fatigue syndrome, highlighting the importance of stigma in empowerment. Many

  • 12/1/15

    Although ALS is considered an untreatable and relentlessly progressive disorder, anecdotal evidence suggests that some patients stabilize or even regain function, albeit temporarily, during the course of their disease journey. Using data from the PRO-ACT database our team identified a small subset of patients (7-25%) that did not decline over periods ranging from 6 to 18 months.

Publications that feature PatientsLikeMe

  • PatientsLikeMe is frequently cited by other publications in fields as diverse as Law, Sociology, and Medicine.

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