Patient collaboration in research leads to meaningful outcomes

CARD 2016 Alzheimer Update participant with iClicker

Dr. Julie Robillard believes that good research puts patients first. In the labs and clinics of the Djavad Mowafaghian Centre for Brain Health, she has been working hard to improve communication between researchers and the people who could most benefit from their work and to integrate patients into research from the beginning, at every stage from study design to communication of results.

“Patient engagement allows us to actively collaborate to ensure the research process is responsive to the perspectives, experiences and values of the patient community,” says Dr. Robillard. “Members of the patient community have so much to contribute to research in Canada; we need to ensure they are hearing about opportunities to be involved, and seeing the value in contributing to the process.” 

Video: To understand what prevents and what would motivate people to participate in research, Dr. Robillard led an interactive session at the 2016 Alzheimer Update to discover what people perceive to be barriers to getting involved in clinical trials.

“When it comes to conditions that affect the brain, there is still so much that we don’t know … and this has important implications for the way we communicate the benefits and risks of research, for example. Engaging patients who experience difficulties with memory or cognition can seem challenging, but we can absolutely work together to develop approaches that work for everybody.”

Dr. Robillard’s lab studies the ways that people understand scientific research, from the way they talk about research online to the ways that they parse the sometimes unfamiliar language of academic publishing. Clear communication – and plain language – is at the heart of her team’s work. One of the goals of Dr. Robillard’s research is to understand the barriers to participation in clinical trials and other studies.

“We’re looking for ways to make research more accessible to the average person,” says Dr. Robillard, whose team is currently working to make the research consenting process clearer and more straightforward. “The patient perspective is crucial to research, so we want to make sure we’re building strong, mutually beneficial relationships at the outset. We have an advantage in that technology is making it easier to communicate; we just have to figure out how to do it well and to maximize the benefits of these technologies while minimizing potential harms.”

From her work in neuroethics looking at the ethical implications of brain research to the development of patient engagement initiatives, Dr. Robillard is enthusiastic about the opportunities that lay ahead for researchers and clinicians. With her team at the Djavad Mowafaghian Centre for Brain Health, Dr. Robillard is uniquely positioned to demystify research for the public and for the patient community, and convey the excitement so many researchers feel for the work they are doing.

“There’s never been a more collaborative time for brain health research,” says Dr. Robillard. “I’m excited for the future, and the opportunities that lay ahead to develop meaningful initiatives that really emphasize the values and perspectives of patients, and that leverage collaboration to produce life-changing discoveries.”