Patients’ lived experiences being integrated into brain research process

A significant shift is happening in the Canadian brain research world around the potential role patients can play in the discovery process. Research organizations and associations are moving away from the isolated roles of patient-as-research-subject (or end knowledge user) and researcher-as-knowledge-provider, and towards the patient being a contributing co-researcher because of the value of his or her lived experiences.

“Our underlying philosophy now is to directly engage patients in research, not just as research subjects, but also in research design and knowledge translation. That’s because patients really are the end users of new research and treatments."

“It’s currently an evolving principle to directly involve end users, especially patients, but it’s the way of the future for all research,” says Vancouver Coastal Health Research Institute scientist Dr. Raymond Lam, director of the Mood Disorders Centre of Excellence at UBC Hospital and investigator at the Djavad Mowafaghian Centre for Brain Health (DMCBH). 

In 2014 Dr. Lam spearheaded the development of MoodFx.ca – a free web application for anyone with clinical depression to track the status of their mental health, anxiety, depression, and work functioning. Patient input was collected during the app development process to inform design and determine what features might make MoodFx most helpful and easy to use. Today, MoodFx has more than 500 registered users. Dr. Lam and his team recently completed their first user survey and are currently developing educational workshops for clinicians about how to use this web tool for patient care. 

“Part of the reason we developed MoodFx was because we thought it was important that people had the ability to track their own moods using scientifically validated methods,” says Dr. Lam. “Studies have shown that systematically measuring outcomes can improve the care of people with depression. But not all clinicians track outcomes. That’s why we put the ability to track outcomes in the hands and smartphones of patients, to empower them to do their own assessments and present their results to their clinicians.”

Supporting patients as researchers through education and organizational change 

At the DMCBH, Dr. Lam and his colleagues are exploring how to incorporate the patient-as-researcher concept into the centre’s executive and/or administrative structure, following the example set by BC Depression REACH (Research, Education, Awareness, and Care Hub).

BC Depression REACH is a new province-wide initiative based out of the Mood Disorders Centre in the DMCBH that connects researchers, clinicians, and people with lived experiences to improve outcomes in people with depression.

“We’re committed to engaging patients not only as end users of the research, but also in helping to develop and prioritize research projects,” says Dr. Lam, co-founder of BC Depression REACH, which was launched in autumn 2014.

“Often, people with lived experience feel intimidated when they’re participating in research committees because they don’t have a research background and they’re not sure about how the research enterprise works,” explains Dr. Lam. “In partnership with the Canadian Depression Research and Intervention Network, we’ve developed a national research training program for people with lived experience – a workshop to bring them up to speed on topics like how research is conducted, how it’s funded, and how knowledge translation works.”

Dr. Lam says that their first workshop held in B.C. last month received uniformly excellent feedback from participants.

“These people now have the background necessary to meaningfully participate in research communities.”