EpLink survey will help steer research in the direction people with epilepsy want

July 7, 2016

By Deron Hamel

EpLink, the epilepsy research program of the Ontario Brain Institute (OBI), is hoping to garner as much feedback as possible through a survey to help the organization prioritize research.
The survey is aimed at people living with epilepsy, their families and those working at epilepsy support agencies.

EpLink’s No. 1 priority is to conduct research aimed at creating and improving therapies for people living with drug-resistant epilepsy. The organization wants to know which areas of epilepsy research are most important to those living with the condition. This is why the survey is important, says Tiffany Scarcelli, EpLink’s knowledge translation lead.

“As we move forward, we want to make sure that the research we’re doing on epilepsy treatments and therapies reflects the needs of people with epilepsy and their families … and to best prioritize this research being done at EpLink,” Scarcelli tells Voices of Epilepsy.

“This is really important because (people living with epilepsy) know firsthand what is important to them – they go through their journey (with epilepsy) on a daily basis, so we want to hear from them about which areas of treatment and care are most important or need to be improved. Our goal for EpLink is to ensure that people with epilepsy get the best care possible.”

After the survey results come in, EpLink’s management committee will review the feedback to decide which studies to focus on the most and how to make research more collaborative. The survey results will serve as a guide to steer the research in the direction people want.

“I think it is essential for EpLink to get feedback on the perspectives and experiences of people with epilepsy and their families so we can be aware of what care areas need more research – for example, surgery, diet, quality of life, etc.,” Scarcelli says.

The survey, which takes about three minutes to complete, can be obtained online by clicking here.

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