How is OBI bringing lab to life > Collaborative research and partnerships


It was only a year and a half ago when Deirdre Floyd became part of the Epilepsy Priority Setting Partnership (PSP) as a member of its Steering Committee – though she has lived with epilepsy her entire life. Deirdre is the President of the Canadian Epilepsy Alliance and representative for the International Bureau for Epilepsy. As a person with lived experience and an advocate, Deirdre believes community partnership in research is absolutely essential.

As Deirdre notes, “Living with drug-resistant epilepsy or seizures can take a toll on an individual’s quality of life, and for that reason our insight and knowledge can help shape research priorities to better address community needs.”

Research is pivotal in developing a deeper understanding of the brain, and at OBI we believe that including the community in the research process is just as crucial to guide research towards the questions the community needs answered. This is why OBI and EpLink (OBI’s epilepsy research program) have partnered with the James Lind Alliance (JLA) to organize an Epilepsy PSP. This partnership aims to shape future research by bringing patients, caregivers and health care providers together in order to hear directly from those who have lived experiences with epilepsy and seizures.

Epilepsy affects 1 in every 100 individuals worldwide, including over 90,000 Ontarians. Of that, 1 in 3 individuals with epilepsy have seizures that cannot be controlled with medication and will require more innovative treatment options. Those with drug-resistant epilepsy report having a lower quality of life and face struggles with isolation, loss or lack of employment, cognitive and memory impairments, and depression. In addition, children with epilepsy have a higher relative risk of intellectual and learning disabilities and difficulties managing mood and emotions.

Since OBI focuses on all aspects of brain health, this initiative will offer a “big picture” approach to understanding community needs - especially because epilepsy and seizures can occur as a result of brain injury, or co-exist with neurodevelopmental disorders such as Rett’s syndrome and cerebral palsy. For that reason, actively listening to stakeholders and incorporating their lived experience into the research process can help uncover questions and concerns from the community that need immediate attention.

The PSP is, for that reason, a vital tool to improve the treatment and care of epilepsy and seizures. It is, in fact, the first initiative of its kind in Canada to help shape the agenda for epilepsy research – setting a precedent for how patient engagement can – and should – work.

“There are still many aspects of epilepsy and seizures that we don’t fully understand, which can pull research in many different directions,” says Rebecca Woelfle, Project Coordinator, Epilepsy PSP, and Communications Lead at EpLink. “By collecting the questions of people in the epilepsy community, we can focus our research lens on the questions that are the most meaningful to the community, thereby helping clinicians to provide better care and improve the lives of people living with epilepsy and seizures, and their families.“

“Living with drug-resistant epilepsy or seizures can take a toll on an individual’s quality of life, and for that reason, our insight and knowledge can help shape research priorities to better address community needs.”

Deirdre Floyd, President of the Canadian Epilepsy Alliance and representative for the International Bureau for Epilepsy

As research agendas are typically set by researchers and the priorities of funders, there are few ways that input from individuals with lived experience, and their caregivers, are taken into consideration. For that reason, the PSP Steering Committee includes patient community representatives like Deirdre Floyd, clinical representatives like Ana Suller-Marti, the PSP Chair and Epidemiologist at the Children’s Hospital of London Health Sciences Centre, and members from EpLink, OBI and the JLA.

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The first stage has already been completed which consisted of gathering questions via a survey. Individuals with epilepsy or seizures, as well as care partners and health care providers, were invited to participate and list the questions they wanted answered about the cause, diagnosis, and treatment of epilepsy, managing day-to-day life or managing co-existing conditions related to epilepsy and seizures. From the first survey, over 1000 questions were received from 500 respondents across Canada.

In stage two, the questions submitted by the epilepsy community are checked against existing research evidence. The questions that have already been answered through research will be shared back with the community as a knowledge translation exercise, while the ones that haven’t will move on to a second survey. We are currently in the latter part of stage two, where we will soon be launching the second survey inviting the community to choose their research priorities from the long list of unanswered questions.

At stage three, community representatives will come together in a final workshop to prioritize the top ten unanswered questions they believe will have the greatest impact on health and quality of life for researchers and funders to address.

A long process, but equally pertinent to support Deirdre’s efforts to improve epilepsy care within the province and the life of those living with brain disorders.

Stay up to date with OBI's PSP on epilepsy through our website and learn about a previous PSP on neurodevelopmental disorders here.