Here at PatientsLikeMe, we are not only focused on helping patients improve their health outcomes, but also on the cutting-edge research that enables those improvements. That’s why we couldn’t imagine better news when we learned that all five of our academic submissions to the American Academy of Neurology (AAN) were accepted for exhibition at their Annual Meeting.
But then we received even more good news: AAN 2011 would be in Honolulu, Hawaii! So we packed our bags two weeks ago and headed to paradise.
As home to over 45,000 patients living with neurological conditions – including epilepsy, multiple sclerosis (MS) and Parkinson’s disease (PD) – PatientsLikeMe is a logical partner for the AAN. Here are some highlights from three of the five studies we presented at the Annual Meeting (click on the title to see the poster for each):
- Patient-Reported Clinician Adherence to Epilepsy Performance Measures of Quality Care. Last year the AAN developed guidelines for doctors treating patients with epilepsy. Naturally, we wanted to know: do patients like you observe their doctors following these guidelines during office visits? According to our survey, most doctors do, but epileptologists and neurologists perform better than non-specialists. Fewer of you felt that your doctors discussed treatment safety and side effects enough with them.
- Development of the MS Treatment Adherence Questionnaire (MS-TAQ): A Scale to Measure Barriers to Adherence in Multiple Sclerosis. R&D Director Paul Wicks‘ voice nearly went hoarse so many AAN attendees were interested in this presentation! In our survey of MS patients, between 16% and 51% missed at least one dose of your disease-modifying treatment (DMT). We concluded that the MS-TAQ (developed by PatientsLikeMe and Novartis) offers patients and clinicians a simple method for identifying barriers to treatment adherence, so you and your doctor can determine how best to keep you using treatments that work for you!
- PatientsLikeMe, an Online Community: Benefits for Patients with Epilepsy. Here’s something we bet you already knew: there’s value in finding other patients like you! In our survey of epilepsy patients, we learned that 55% of you 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. 27% each said that PatientsLikeMe was useful for managing side effects and for improving treatment adherence.
Yes, the weather was lovely in Hawaii, but that’s not the only reason we wish you could have been there. Our biggest takeaway was that so many researchers, doctors and industry partners want to hear from patients like you! They are excited about the work we have accomplished together already, and they are full of ideas about more that can be done. We flew home feeling exactly the same way.
That’s why we hope you’ll keep sharing, keep taking surveys and keep telling us what you really think. Because your message is getting across!