Format

Send to

Choose Destination
See comment in PubMed Commons below
Epilepsy Behav. 2012 Jan;23(1):16-23. doi: 10.1016/j.yebeh.2011.09.026. Epub 2011 Nov 17.

Perceived benefits of sharing health data between people with epilepsy on an online platform.

Author information

  • 1PatientsLikeMe Inc., Cambridge, MA 02141, USA. pwicks@patientslikeme.com

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.

PMID:
22099528
DOI:
10.1016/j.yebeh.2011.09.026
[PubMed - indexed for MEDLINE]
Free full text
PubMed Commons home

PubMed Commons

0 comments
How to join PubMed Commons

    Supplemental Content

    Full text links

    Icon for Elsevier Science
    Loading ...
    Support Center