By Dr Etáin Quigley, Post-Doctoral Researcher, ARCH

Users as Experts

I attended an insightful mental health forum this week which brought key stakeholders in the area of child and adolescent mental health together.  Service providers, ranging from of psychiatrists, psychologists, social workers, school teachers/principles and so on sat alongside service users, yes young people and teenagers, and their families, and all spoke of their experiences of being involved with the system/s.

The discussions provided a space where experts (traditional trained experts) could learn from experts (those who emotionally and wholeheartedly live the system) and the results were quite enlightening.

As an academic I am used to attending academic and expert led knowledge exchange forums. At these I usually hear presentations on research projects which provide me with results from data collected in the field. Occasionally, and more regularly to date, a service user provides an add on discussion at the end of these sessions and to be honest sometimes it can feel like a ‘tick box exercise’ whereby ‘the patients voice has been included’.

As an academic I also work with patients and gather their lived experiences, whether it be through interview or focus group sessions, and thus provide a platform for service users to put forward their lived experiences of using the system and/or living with the condition.

“It is perhaps time to change our perception of who the expert is and open up a forum for mixed expertise engagement and interaction.”

However, to date these two groups of experts have typically been segregated to some degree, albeit that their data would be combined to produce a holistic and comprehensive narrative at a later date.

Yesterday was different. The forum provided a space for these two groups to become one and share their expertise and exchange knowledge in a respectful and calming space. Whilst I accept that there is a fear of practitioner bashing, particularly by frustrated patients and their families who are experiencing difficulties during their engagement with the system, yet this fear was not lived out yesterday.

This is an interesting method of sharing expertise and allowing various stakeholders to learn from each other. Service users learned the unofficial steps often taken on their behalf by frustrated practitioners attempting to navigate a rigid system, and service providers learned about many issues faced by service users and their families and the small steps that could be taken to alleviate, some at least.

Discussions between varied stakeholders who experience the service at grass root level, albeit often from different perspectives, facilitated a different type of knowledge generation. It generated a rich and insightful tapestry of knowledge that may be key to, firstly identifying many of the problems faced by contemporary healthcare systems; and secondly, producing workable solutions.

Whilst such approaches are not new to ARCH, I would consider my colleague Dr Maria Quinlan to be an expert in the field of participatory research aimed at promoting successful implementation and scaling, it is less used in the real world of system development. And, whist such an approach is not suited to all projects, it is definitely a method that should be considered at design stage and weighed up in terms of its usefulness to answer the research question.

It is perhaps time to change our perception of who the expert is and open up a forum for mixed expertise engagement and interaction.

You can contact Etáin on etain.quigley@ucd.ie or call 01 716 5410.

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