Understanding the Value of 'Experts by Experience'

I recently had the great opportunity to interact with an inspiring health care leader from the United Kingdom.

The conversation sparked many points of reflection for me, in particular, around the current role of service-users in the mental health care system. From research we have noted many benefits in having service-users as active participants in their care, as I discussed in my previous blog. In addition, over the past couple of decades, there has been a complex jigsaw of consumer activities mainly either working within the system to advocate for quality of care and promote culture change, as well as, outside the system in independent consumer organizations advocating for system change and at times role modeling alternative services.

Though there has been an exponential rise in service-user involvement within the mental health system at various levels, this movement has not reached its full potential. I believe there continues to be a lack of consistency in accepting service-users as ‘experts by experience’ with a privileged understanding of their mental distress, what they need for their recovery, and insight into how the service provision is, and is not, meeting their needs. Feeling inspired by my recent interactions, I believe it is time to stop talking about the importance of service-user involvement and begin to truly see the value in the integration of experts by experience throughout all levels of health care organizations. I am making a commitment to formally initiate this within my span of control to ensure as practice leaders we consult with ALL stakeholders in the work that we do in a more consistent and meaningful manner.

It is best practices to consult with experts in health-care delivery to ensure safe and quality of care provision. It is time to expand the category of experts beyond health care providers and ensure those with lived experience, such as service users and careers, are equally valued and consulted in the activities which directly and indirectly impact their lives.