Who should be setting priorities for medical research? Historically, individual researchers or industry has done this, without considering the perspectives of patients and clinicians. EpLink, The Epilepsy Research Program of the Ontario Brain Institute, wants to bring these groups together to understand how research can better serve the needs of the epilepsy community.
We have launched a national survey to identify and prioritize unanswered questions about epilepsy and seizures. In partnership with the Ontario Brain Institute and the James Lind Alliance, we are bringing together patients, caregivers, and clinicians to agree on a Top 10 list of epilepsy-research priorities.
About 300 000 Canadians are living with epilepsy. Depending on location and access to care, family doctors, pediatricians, internists, neurologists, or epileptologists may treat epilepsy patients in Canada. The burden of epilepsy is high, both on the health care system and on patients and caregivers. There is a need to identify and prioritize the unanswered questions about epilepsy treatment and care in order to better serve the patient community and inform a national research agenda.
As clinicians on the front lines, we want to know your questions about the diagnosis, treatment, or management of epilepsy. The complex nature of epilepsy can pull research in many directions, and the results of this survey will identify the questions that are most meaningful to the people who benefit from research.
As a clinician, you may be wondering how best to care for your patients. This is your chance to influence epilepsy research so that it focuses on areas that will have the greatest impact on your patients and allows you to provide better care.
All the questions submitted will be reviewed and checked against existing evidence to determine if they are true uncertainties. The questions that have not been answered by research will be brought forward to a second survey where the community can rank the questions they want to be prioritized.
You are eligible to complete the survey if you are a:
• Health care provider working with people with epilepsy.
• Person with epilepsy or seizures.
• Caregiver, friend, or family member of someone with epilepsy or seizures.
• Community Epilepsy Agency representative.
No one knows epilepsy better than the people who live and work with it every day. Let us know what matters to you.
To complete the survey or to learn more about this partnership, please visit https://braininstitute.ca/epilepsy-psp (survey is available in French and English).
—Amaya Singh, PhD
Knowledge Translation Specialist, EpLink
This post has not been peer reviewed by the BCMJ Editorial Board.