Paul Wicks|Dorothy L. Keininger|Michael P. Massagli|Christine de la Loge|Catherine A. Brownstein|Jouko Isojärvi|James Heywood
Perceived benefits of sharing health data between people with epilepsy on an online platform
PatientsLikeMe (United States)|UCB Pharma (Belgium)|PatientsLikeMe (United States)|UCB Pharma (Belgium)|PatientsLikeMe (United States)|PatientsLikeMe (United States)
h2abstracth2 epilepsy community developed patientslikemecom share data patients improve outcomes finding patients like 14day response period 221 patients epilepsy mean age 40years sd 12 range 1772 66 female completed survey benefits perceived prior using site third respondents 30 know anyone else epilepsy could talk 63 least one patient could connect perceived benefits included finding another patient experiencing symptoms 59 gaining better understanding seizures 58 learning symptoms treatments 55 number benefits associated number relationships patients ifi42168173 ipi0001 patients epilepsy reported array perceived benefits similar reported populations diseases controlled sharing health data may potential improve disease selfmanagement people epilepsy