Press Releases

Presentations

  • 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. 

  • 4/25/13 6:04 pm EDT

    Co-founder and President Benjamin Heywood was a speaker at The Genomes Environments Traits (GET) Conference, an event for people working at the frontiers of human biology.

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

PatientsLikeMe members share about their #diabetes challenges & concerns on the blog! http://t.co/tIfGm6Ar3V http://t.co/gS98unrsm9-1 day 2 hours ago
RT @HBA_RTPChapter: THANK YOU @BiogenIdec for hosting us & @SallyOkun @PatientsLikeMe for a great event last night! #patientsfirst http://t…-1 day 5 hours ago
“Today’s patients are combing through the data, they’re running their own statistical tests” @PaulLikeMe @BBCRadio4 http://t.co/MbdQdzWZVP-2 days 2 hours ago
“What’s powerful about the internet isn't so much as a means of transmission but of dialogue”@PaulLikeMe @BBCRadio4 http://t.co/gcgZyzcuRA-2 days 4 hours ago