28th November 2016 Blog

Who are the 'experts by experience' in mental health research?

Lived experience • Research methods •

Before Laura left the McPin Foundation in the summer 2016 to begin a PhD she wrote this blog exploring some of the issues about how we use our lived experience of mental health problems as researchers, and the labels we use as an organisation.

We have waited to publish it now because it beautifully encapsulates some of the issues we have been struggling with as a team, and why we have made some of the changes in the language we use reflected in the overview to how we work we released yesterday.

For example we have decided not to use ‘Peer’ in job titles anymore and to use ‘expertise from experience’ in preference to ‘experts by experience’.

As Laura also makes clear using lived experience of mental health problems, or any other personal experience, in research can be challenging for individuals as people as well as researchers.

We are interested in thinking further with the sector about what further practical support and training researchers need in using their own expertise from experience.

Laura Hemming

Laura Hemming

Laura Hemming

This blog is about my journey and identity as a researcher in an organisation that emphasises the importance of placing lived experience at the heart of mental health research.

My journey as a researcher began a little over a year and a half ago when I was employed by the McPin Foundation as an ambitious, albeit inexperienced, graduate research assistant.

My success in obtaining this role, I was told, stemmed primarily from my (I felt, limited) prior research experience, and was not related to any lived experience of mental health difficulties that I was able to bring to the role, although I briefly alluded to this when applying.

When I began the role, my experience and understanding of peer/service user/collaborative/survivor research was extremely limited. Despite this, given the passion that McPin’s staff shares for public and patient involvement in research, I soon became familiar with terms such as ‘service user researcher’ and ‘expert by experience’ and what it meant to carry out ‘collaborative’ research.

To begin with, it appeared to me that these terms can sometimes leave much to the imagination. However, I soon deduced that there were two research identities that a novice researcher could assume; that of a researcher with lived experience, and that of just ‘researcher’.

At McPin this demarcation is frequently indicated by the use of the prefix ‘peer’ in job titles; the absence of this in my title of ‘Researcher’ led me to feel that my identity in the organisation was that of a researcher without lived experience.

Indeed, lived experience was not a requirement for my role; the emphasis being my experience and interest in Psychology and social research.

The journey

Fast forward a year into my employment with McPin, when I became diagnosed with panic disorder, which rendered me incapable of leaving my own home for overwhelming fear of a panic attack/imminent death/mortal embarrassment.

During this time, amidst fears of losing my busy social life, friends and independence, were daily concerns about my ability to maintain my full time job as a researcher. Given that during this stressful time for me, the 30 minute bus journey into work could be likened to the intense anxiety experienced when jumping out of a plane at 12,000 feet, my concerns were perhaps not misplaced.

Thankfully, however, I was lucky enough to work for an organisation that was both understanding and compassionate of ill mental health (or physical health for that matter), and who moved heaven and earth to accommodate my seemingly irrational fears.

A few months on, and I am travelling into the office more often, after a period spent mainly working from home with some carefully planned excursions to the office during hours when public transport was quieter.

Aside from the inevitable difficulties of coping with this challenging mental health disorder, this experience made me question in depth my role as a researcher at a mental health research charity, leading to what I could perhaps term an occupational identity crisis.

Did this make me an ‘expert by experience’? Did this add value to my growing repertoire of research experience? Could I use this experience to become an even better researcher and add a layer of meaning to research which I was previously unable to provide? Did this mean that my opinions now held more value? Did my experience even count as an ‘expert’ experience?

The present

Here, I attempt to question the meaning of the term ‘expert by experience’ in the confines of mental health research, focussing primarily on the qualities and nature of lived experience deemed necessary to qualify for ‘expert by experience’ status.

It is important to note that I make no attempt to accurately and concisely define the term ‘expert by experience’, as I believe doing so is beyond the scope of this reflective blog, and perhaps even an impossible task altogether.

Merely, I would like to share with you my inquisitive approach to the term and raise some questions that I have pondered during my time as a researcher with an organisation which strives to champion lived experience in mental health research.

So what might we mean by ‘lived experience’ of mental health difficulties? For me, this demarcation is complex.

It is thought that mental health should be understood as a spectrum along which several overlapping disorders lay, which differ in severity as measured by the impact a disorder has on a person’s ability to function ‘normally’.

To me, it is not clear where on this spectrum people need to sit in order to qualify as having the ‘right amount’ of experience to be an ‘expert’. Clearly, the experience of living with psychosis is not the same as experiencing mild stress in the workplace, but should both be considered ‘expert’ experience?

For me personally, I would have felt almost fraudulent assuming the title of ‘expert by experience’ when under the same umbrella belonged people with what I deemed much more difficult and enduring battles with their mental health.

And what about when the presence or absence of mental ‘illness’ is complicated by introducing mental wellbeing as a factor? Are those who have positive strategies for managing their mental health and wellbeing also, in a sense, ‘experts by experience’?

This is a question that particularly came to mind when I recently worked on an evaluation of Kent County Council Public Health’s Mental Wellbeing Programme. This project involved the evaluation of eight separate services in Kent, all aimed at improving wellbeing at a population level; thus, the services we evaluated were not primarily concerned with the recovery of those experiencing mental health difficulties, but instead focused on mental health promotion and ‘keeping people well’.

Whilst McPin endeavours to include an element of lived experience in all research projects, the nature of this evaluation enabled me to question the essence of lived experience in a mental health promotion context.

Essentially, the target population of the services we were evaluating was the general public – i.e. all genders, ages, ethnicities and health statuses. We therefore found it difficult to identify who might be able to provide ‘lived experience’ in this sense.

In this context, it became clear that the boundaries between ‘lived experience’ and more general ‘life experience’ were somewhat blurred, which made me wonder whether bringing lived experience of mental health to a research project was simply just one example of how, naturally, people bring their life experience to their work.

Does life experience alone contribute towards an ‘expert by experience’ status? If so, are all staff at McPin, and indeed in other research institutions ‘experts by experience’? By acknowledging this, do we dilute the meaning of lived experience as it is commonly understood?

In addition to the question of ‘severity’ and the question of ‘lived experience’ vs. ‘life experience’, another question I found myself asking are whether there are unwritten rules about prerequisites that ‘lived experience’ must meet in order to qualify for ‘expert by experience’ status?

For instance, is it vital that I have lived experience of panic disorder plus experience of using some sort of service for this health issue? Or is experiencing the illness itself enough to enable me to become an expert by experience?

What is meant by ‘use’ of a service? Does medication alone count as a ‘service’? Do alternative therapies count as a service? Do social prescription activities which serve as techniques for managing mental health, such as reading or exercise, count as a service?

What about the two thirds of people with depression or the 45% of those with schizophrenia who do not receive any treatment at all? Are they exempt from ever being able to become an ‘expert by experience’ due to their lack of contact with services?

Do you need research experience too?

Finally, is lived experience of mental health problems alone enough to brand somebody an ‘expert by experience’, or does there need to be an agreed level of research experience too?

Whilst experts by experience are deemed to add a wealth of benefits to a study that a researcher without lived experience can provide, I feel – and it is the McPin Foundation’s position too – that it is important that the ‘research’ aspect of the role is not overlooked.

And indeed, I feel that in my experience of working with peer researchers, in addition to their lived experience of mental health, they also have strong research skills, often academically recognised by PhDs or Masters Degrees, or sometimes just in prior research experience.

I personally believe it is important that the prefix of ‘peer’ to the title of researcher does not overshadow these important research skills. The term ‘expert by experience’ attempts to promote the idea that experiential knowledge is just as powerful as professional knowledge, but let’s not forget to acknowledge people’s professional knowledge too.

Just as nobody likes to be defined by their label of mental illness, I feel it is important that we acknowledge the research skills that experts by experience bring and not just their contribution of a lived experience perspective.

To reflect, I feel that exactly who qualifies as an ‘expert by experience’ is a contentious and as yet ill-defined concept. Ultimately, perhaps ‘experts by experience’ are unique to each research study, depending on the research topic, methodology and research participants.

In this case, do we even need to provide a blanket definition of experts by experience? Could this even hinder the flexibility for who can qualify as an expert by experience?

What do you think? Can you tell us of any other papers or blogs that also discuss this?

All views and opinions in this blog are the author’s own and do not necessarily reflect the McPin Foundations views.

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