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.
- Filed Under: Epilepsy
- Tags: adherence, Epilepsy & Behavior, epilepsy community, epilepsy survey, friends with epilepsy, friends with same condition, online community benefits, published article, seizure types, side effects, survey results, treatment adherence, UCB
In today’s news…
BRUSSELS, BELGIUM and CAMBRIDGE, MA–(Marketwire – April 12, 2011) – In a survey amongst people with epilepsy in the U.S. who have joined PatientsLikeMe®, the leading health data-sharing website for patients, respondents indicate that better seizure understanding and improved adherence are key benefits of using the site. The majority of respondents (55%) indicate a better understanding of their seizures, while one in four (27%) report improved adherence to treatment as a result of joining the PatientsLikeMe epilepsy community. When asked about their social interactions with other patients, one in three respondents (30%) said they did not know a single other person with epilepsy before joining the site; 63% of these said they were now communicating with one or more patients on the site.
The complete results from this survey of 221 epilepsy patients are being presented this week at the annual meeting of the American Academy of Neurology, in Hawaii, U.S. (April 9th-16th). In early 2010, PatientsLikeMe and UCB first invited U.S. epilepsy patients to share their seizure experiences, symptoms and treatments through the website; there are more than 3,600 members to date. UCB receives annonymized, aggregated data from the PatientsLikeMe epilepsy community…. >> Click here to see the full news release.
- Filed Under: Conditions, Epilepsy, Research
- Tags: AAN, American Academy of Neurology, Epilepsy, epilepsy patients, epilepsy research, medication adherence, seizures, social media and pharma, treatment adherence, UCB