• 24 Days of Giving

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 @NapkinNotesDad: My Patients Like Me (PLM) Profile: http://t.co/iIz8BV4458 Donate your data for you, for others, for good. #24Daysof…-27 min 34 sec ago
PatientsLikeMe member Laura explains why getting the word out & being a #patientadvocate is so important http://t.co/E3VZ3WQ1Xv #hcsm-6 hours 8 min ago
Can #patients become innovators? A look back at @2rz's talk at #TEDx Springfield 2013 http://t.co/7kHSf2YllP #innovation #hcsm-8 hours 8 min ago
National #Epilepsy Awareness Month is coming to a close. What's your epilepsy story? http://t.co/PrhW5QYKYk #NEAM http://t.co/EgammQ02kz-10 hours 8 min ago