Press Releases

Presentations

  • 10/2/14 1:14 pm EDT

    In his keynote address at the Drug Information Association's (DIA's) 50th annual meeting, Co-Founder and Chairman Jamie Heywood discussed how patients can become partners with industry. The company was also honored with the 2014 DIA President’s Award for Outstanding Achievement in World Health, an award Jamie accepted on behalf of PatientsLikeMe members and staff.

  • 10/18/13 4:36 am EDT

    Presenting at TEDxSpringfield, PatientsLikeMe's Rishi Bhalerao argues the path to innovation in healthcare begins with patients, because they're the ones who know best what it's like to live with a condition. 

Research

  • Biomed Central: Adaptation and validation of the Treatment Burden Questionnaire (TBQ) in English using an internet platform


    Treatment burden is the workload imposed by healthcare on patients and the effect it has on quality of life. The Treatment Burden Questionnaire (TBQ) aims to assess treatment burden in different condition and treatment contexts. We used PatientsLikeMe’s Open Research Exchange to evaluate the validity and reliability of an English version of the TBQ, a scale that was

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  • Trials Journal: Could digital patient communities be the launch pad for patient-centric trial design?

    The system of medical discovery does not revolve around patients as unique individuals with preferences, needs, and desires. Rather it revolves around scientific scrutiny, the needs of the sponsor, and the desires for regulatory approval. The patient is only a subject. Is it any wonder, then, that some patients have rejected the current medical paradigm and sought to find their own path?

     

  • As patients have found it easier to connect online, so too have they started organizing online; they’ve begun sharing their data, and even attempting to run their own analyses as to whether the trials they are enrolled in might yield benefits before the study has concluded. In this editorial, we argue that a new social contract must be drawn up that respects the autonomy of patients as individuals while also maintaining scientific rigour.

From Twitter

RT @PaulLikeMe: Really enjoyed a seminar with our new patient advisory board on how we do research @patientslikeme! #practicewhatyoupreach-3 hours 43 min ago
What makes your #IPF symptoms better? http://t.co/sT5XNlEQtq #pulmonaryfibrosis http://t.co/zfj9N9acgb-4 hours 32 min ago
We're looking for a Research Scientist to join our team http://t.co/UoEpdjbX1P #jobopening-6 hours 2 min ago
"To change the direction of your business & our industry, listen to the ideas of a few 'Course Changers'" http://t.co/ln4oVOg1p0-7 hours 32 min ago