Helping The Patient Be Heard

A key priority of OBI is amplifying the patient voice in research. To this end, OBI has helped establish five Patient Advisory Committees (PACs) which connect patients, their families and their advocates with people working at the frontier of brain research.

Each of the five OBI Integrated Discovery (ID) programs has a PAC: the Cerebral Palsy network (CP-NET), the Province of Ontario Neurodevelopmental Disorders network (POND), EpLink focusing on epilepsy, Canadian Biomarker Integration Network in Depression (CAN-BIND), and the Ontario Neurodegenerative Disease Research Initiative (ONDRI). These PACs are not only the link between researchers and patients, but also the link between research and the greater community.

The PACs are crucial to improving the lives of people living with brain disorders. “It’s the role of the PAC to foster an open dialogue among patients, physicians, and researchers; to deconstruct the stigmas and educate patients, researchers, caregivers, and the public alike,” says Michael Kennedy, who works for media relations at University of Toronto and volunteers on the communication team of EpLink. Kennedy himself has epilepsy and has first-hand experience with the stigma of brain disorders. “Before I received surgery I needed to hide my symptoms, I didn’t want to admit I had a disorder – because I was embarrassed, my self-confidence was shaken,” he admits. A common goal shared by all the PACs is to dispel the misunderstanding and stigma surrounding brain disorders by increasing public understanding. “It’s essential to help people with a brain disorder feel accepted and comfortable with themselves, free of embarrassment, and this requires that the patient voice be heard and understood by everyone”.

Living with a brain disorder can be all-encompassing, and always involves more people than the individual patient: parents, friends, teachers, relatives, employers…everyone is affected. “It’s so important to engage the parents of children living with a brain disorder— to ask them what they need, let them know what is being done to help meet those needs, and to allow them to have a direct hand in caring for and empowering their children,” says Brenda Agnew, Director of the Parent Advocacy Link for Three To Be, an Ontario-based organization working with CP-NET to improve the lives of children and families affected by cerebral palsy.

Dr. Sagar Parikh, Deputy Psychiatrist-in-Chief at the University Health Network, underscores the importance for strategic knowledge translation from research to patient care and advocacy. Dr. Parikh is the Knowledge Translation Lead at CAN-BIND, the OBI-funded research program on major depressive disorder. One of the key messages that Dr. Parikh communicates is that research should be not only patient-directed, but also patient-motivated. That is to say, understanding and integrating patient needs into research and health care.

OBI encourages the PACs to reach across disorders whenever possible, to collaborate and combine efforts toward a common goal. The OBI’s patient advisory model integrates all aspects of brain health care by, first creating a common ground for research across different diseases, and also by establishing a dialogue among patients, caregivers, and researchers affected by a wide variety of diseases.

With this in mind, OBI arranged a day-long event on February 7, 2014, for each of these groups to meet and discuss their common hurdles, goals, and cooperative strategies. Altogether, the event involved about 50 attendees, representing nearly 30 groups across Ontario collectively working to the benefit of brain health in Ontario.

“I’ve really appreciated this meeting,” says Rozalyn Werner-Arcé, Executive Director of Epilepsy Ontario. “Some of us [different epilepsy advocacy groups involved in EpLink] have been working together for so long and have never met face-to-face.  Meeting in person is invaluable.  It’s hard to have conversations with any depth by teleconference and yet in just half an hour today, we’ve had the opportunity to dig into some issues and have had helpful discussion. It’s brought us all on to the same page. It’s also great meeting people from the other groups, hearing their ideas and seeing the possibilities for convergence. This is a huge step forward”.

The OBI PACs understand that patient needs need to be placed at the centre of patient-focused research. This means an upward spiral of positive interaction among stakeholders: better uptake of cutting edge brain research by clinicians, an avenue for patients and caregivers to inform research, and opportunities for researchers to share important advances from their fields. Working together, the PACs are bringing the best of brain health in Ontario to those who need it most.

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