Last April, we had the honor of presenting the results of our epilepsy survey at the American Academy of Neurology (AAN) Annual Meeting. In some of the key takeaways, we shared that 55% of respondents consider PatientsLikeMe “moderately or very” helpful in learning about the type of seizures they experience. 45% found it useful for charting seizures, and 30% felt they received better healthcare as a result. In addition, 27% each said that PatientsLikeMe was useful for managing side effects and for improving treatment adherence. (Check out our press release for more on this survey, which we conducted with our partner UCB. PatientsLikeMe and UCB launched the epilepsy community in 2010.)
Now, we’re pleased to announce that our full survey results have been published as an open access article in the scientific journal Epilepsy & Behavior. This gives you and anyone interested in epilepsy the opportunity to dig deeper into our findings. For example, another interesting discovery is that one in three epilepsy patients surveyed did not know a single other person with their condition. That is – until they joined PatientsLikeMe. Survey respondents reported the benefits of using an online community to find other patients like them, and strikingly, the more friends with epilepsy that users had in the online community, the more benefits they experienced from using the site.
Do you agree that having friends with the same condition – either online or offline – has affected your experience for the better? Share your thoughts in the comments section.