title: Perceived benefits of sharing health data between people with epilepsy on an online platform.
abstract: An epilepsy community was developed on PatientsLikeMe.com to share data between patients to improve their outcomes by finding other patients like them. In a 14-day response period, 221 patients with epilepsy (mean age: 40 years, SD: 12, range: 17-72, 66% female) completed a survey about benefits they perceived. Prior to using the site, a third of respondents (30%) did not know anyone else with epilepsy with whom they could talk; of these, 63% now had at least one other patient with whom they could connect. Perceived benefits included: finding another patient experiencing the same symptoms (59%), gaining a better understanding of seizures (58%), and learning more about symptoms or treatments (55%). Number of benefits was associated with number of relationships with other patients, F(4,216)=8.173, P<0.001). Patients with epilepsy reported an array of perceived benefits similar to those reported by populations with other diseases. Controlled sharing of health data may have the potential to improve disease self-management of people with epilepsy.
authors.affiliation: PatientsLikeMe Inc., Cambridge, MA 02141, USA. pwicks@patientslikeme.com
authors.forename: Paul
authors.initials: P
authors.lastname: Wicks
authors.forename: Dorothy L
authors.initials: DL
authors.lastname: Keininger
authors.forename: Michael P
authors.initials: MP
authors.lastname: Massagli
authors.forename: Christine
authors.initials: C
authors.lastname: de la Loge
authors.forename: Catherine
authors.initials: C
authors.lastname: Brownstein
authors.forename: Jouko
authors.initials: J
authors.lastname: Isojärvi
authors.forename: James
authors.initials: J
authors.lastname: Heywood
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D004827:Epilepsy / Q000523:psychology*; D005260:Female; D006801:Humans; D033181:Information Dissemination; D008297:Male; D008602:Mental Healing; D008875:Middle Aged; D009043:Motor Activity; D009862:Online Systems; D010353:Patient Education as Topic; D010465:Perception / Q000502:physiology*; D012648:Self Care / Q000379:methods*; D012919:Social Behavior; D055815:Young Adult