Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2021 Apr 26;7(1):21.
doi: 10.1186/s40900-021-00266-1.

Patient oriented research in mental health: matching laboratory to life and beyond in Canada

Affiliations

Patient oriented research in mental health: matching laboratory to life and beyond in Canada

Jenessa N Johnston et al. Res Involv Engagem. .

Abstract

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.

PubMed Disclaimer

Conflict of interest statement

The authors declare they have no competing interests.

References

    1. Krahn M, Naglie G. The Next Step in Guideline Development: Incorporating Patient Preferences. JAMA. 2008;300(4):436–438. doi: 10.1001/jama.300.4.436. - DOI - PubMed
    1. Schünemann HJ, Fretheim A, Oxman AD. Improving the use of research evidence in guideline development: 10. Integrating values and consumer involvement. Heal Res policy Syst. 2006;4:22. doi: 10.1186/1478-4505-4-22. - DOI - PMC - PubMed
    1. Elberse JE, Caron-Flinterman JF, JEW B. Patient–expert partnerships in research: how to stimulate inclusion of patient perspectives. Heal Expect. 2011;14(3):225–239. doi: 10.1111/j.1369-7625.2010.00647.x. - DOI - PMC - PubMed
    1. UK Standards for Public Involvement. The UK Standards. [cited 2021 Mar 3]. Available from: https://sites.google.com/nihr.ac.uk/pi-standards/standards
    1. Canadian Institute of Health Research . Foundations of SPOR [Internet]. Strategies for SPOR. 2014.