Epilepsy Priority Setting Partnership - Expression of Interest for Final Workshop

Introduction

Are you interested in participating in a two-day virtual workshop to set priorities for epilepsy research? This is a great opportunity to help shape future research that could change the lives of people who live and work with epilepsy.

What is the workshop for?

The aim of the workshop is to come to a consensus on the final top 10 priorities for future research on epilepsy and seizures. This list is intended to help researchers focus on finding answers to questions that matter most to people who live with epilepsy, their caregivers/families and the health care professionals who work with them.

Who are we?

The Epilepsy Priority Setting Partnership is a collaboration between EpLink, the Ontario Brain Institute and the James Lind Alliance. It is funded by the Ontario Brain Institute, a provincially-funded, not-for-profit brain research centre.

In October 2019, we launched a survey asking people who live and work with epilepsy to tell us the questions they wanted research to answer. Over 500 people responded, submitting almost 1900 questions! We then summarized these responses into research questions and created a list of the most common questions asked, and in a second survey, we asked people to choose the 10 questions from this list that were most important to them.

Who are we looking for?

We are looking for 24 people who have experience with, or knowledge about, epilepsy and seizures. This includes patients, family members or caregivers, and health care providers (such as neurologists, family physicians, nurses and other allied health professionals). This is an opportunity for people who aren’t already influencing the research agenda to have their say and promote their needs.

We need people to join the workshop who are prepared to share their experiences and opinions, respectfully listen to other people’s experiences and opinions, and participate in group discussions.

We are looking for expressions of interest in participating in the workshop from people from across Canada who fall into one or more of the following categories:

• Person with epilepsy or seizures
• Caregiver/former caregiver of someone with epilepsy or seizures
• Friend/family member of someone with epilepsy or seizures
• Health care provider
• Representative of a community epilepsy agency

In addition, we are interested in hearing from those who:

• Are from visible minority ethnic groups
• Are from a variety of social backgrounds
• Experience seizures as part of a co-existing syndrome or condition

Together, we will make decisions about the top 10 research priorities we agree should be the focus of future epilepsy research.

What will I have to do?

If you are selected to participate in the workshop, you will take part in both small and large group discussions. These discussions will be led by skilled facilitators to ensure that all participants’ perspectives are shared and heard respectfully and manage any disagreements. If you are uncomfortable at any time during the workshop, support personnel in addition to the facilitators will be on call who you can talk to confidentially. While there is no known risk to participating there is the potential during the workshop that participants may feel uncomfortable when sharing one's personal stories/lived experiences.

You may choose to share your personal experience as part of the discussions and decision process. This may help other participants understand the importance of including questions in the final top ten list of priorities. If you choose to share your personal experience, you may feel uncomfortable as you share your stories and perspectives. While we cannot guarantee confidentiality, all participants will be asked to respect one another’s experience and maintain other participants’ confidentiality. Participants may also choose to sit out or withdraw at any time in the workshop and will not be penalized.

When will the workshop take place?

The workshop will take place virtually over videoconference (using Zoom) on April 6 & 7 from 1:00PM to 5PM EST. While held virtually, the workshop will not be recorded. Reasonable expenses for covering childcare will be reimbursed by the Ontario Brain Institute. Please let us know if you have accommodation needs in order to attend and participate virtually. For more information, please contact Carla Southward at csouthward@braininstitute.ca or 416-725-6001.

To apply:

If you are interested in taking part in the workshop, please complete the Expression of Interest on the next page by Sunday, February 21, 2021.

Only members of the Project Team – Carla, Rebecca Woelfle and Rachel Chepesiuk – will have access to your contact information shared in the Expression of Interest. The information you include will be stored temporarily on a password-protected server. Other information will be reviewed by the Epilepsy PSP Steering Group, a committee of people with lived experience of epilepsy and seizures, caregivers and healthcare professionals. All information will be deleted permanently after participants are selected for the workshop.