In this episode of Media Nouveau, we examine PatientsLikeMe, a new media platform that rests at the unlikely intersection of social media and scientific research. What are the implications of publicizing personal health data and applying it to a healthcare setting? We address issues of collective intelligence, HIPAA regulations, and protection of pre-existing conditions in order to explore this question and to reflect on the contributions of PatientsLikeMe regarding patient-centered care and biomedical research.
Castellucci, Maria. “Leveraging online platforms to measure how patients feel.” Modern Healthcare.
Edwards, Jim. “PatientsLikeMe Is More Villain Than Victim in Patient Data “Scraping” Scandal.” CBS News, CBS Interactive, 18 Oct. 2010.
Pai, Aditi. “Survey: Despite risks, patients want to share data.” MobiHealthNews, 25 Jan. 2014.
“PatientsLikeMe and Shire Pharmaceuticals Collaborate to Study Rare Genetic Diseases.” Business Wire, 10 Apr. 2017.
Surowiecki, James. “The Collective Intelligence of the Web.” The New Yorker, The New Yorker, 20 June 2017.