As patient-oriented research gains popularity in clinical research, the lack of patient input in foundational science grows more evident. Research has shown great utility in active partnerships between patient partners and scientists, yet many researchers are still hesitant about listening to the voices of those with lived experience guide and shape their experiments. Mental health has been a leading area for patient movements such as survivor-led research, however the stigma experienced by these patients creates difficulties not present in other health disciplines. The emergence of COVID-19 has also created unique circumstances that need to be addressed. Through this lens, we have taken experiences from our patient partners, students, and primary investigator to create recommendations for the better facilitation of patient-oriented research in foundational science in Canada. With these guidelines, from initial recruitment and leading to sustaining meaningful partnerships, we hope to encourage other researchers that patient-oriented research is necessary for the future of mental health research and foundational science.
This paper presents a roadmap for patient-oriented research in mental health in Canada. At the level of laboratory science, the direct involvement of patients and their collaboration with researchers on experimental development and dissemination of results has been scarce. With voices of collaborative patient partners, graduate students and the principal-investigator, it makes a clear case for involving people with lived experience within translational mental health research, which has shown positive outcomes that could potentially shape public policy and future practice. Starting with the premise that meaningful engagement spurs meaningful results, the paper addresses current literature, a discussion of the challenges faced by researchers and patient partners and includes a consideration of COVID-19 consequences. Ending with clear recommendations, this paper is an exciting call to action for involving patient partners in the full research cycle of mental health research and beyond.
Keywords: Knowledge transfer; Laboratory preclinical research; Mental health; Patient partners; Patient-oriented research.