By Brett Scholz
Critical health psychologists generally want to practice acts of allyship through and beyond their work. In this post, Brett Scholz presents a call to go beyond thinking of consumers as participants in your research practice, and to instead ensure you collaborate and engage with consumers in epistemic practices.
Please note that I use the term ‘consumer’ throughout this blogpost because it is the language most used in Australian health services and policy contexts to refer to people or groups in other jurisdictions sometimes referred to as service users, patients, or people with lived experience. I acknowledge the word consumer is not unproblematic and that many have an uneasy relationship to the word.
As I imagine is the case for many ISCHPers, I spend a lot of my time thinking about how to redress power imbalances in my research. I was lucky enough that in my first job post-PhD, I was based in a research centre that also had an identified position for a consumer researcher. For some formative years in my research career, this meant that all my research outputs were at least co-authored (and in most cases also co-produced or co-designed) by someone with lived experience of the phenomenon of study. That consumer role (along with my role and the centre more broadly) was de-funded despite important inroads, and so being able to do meaningfully co-produced work since then has been a matter of resources.
I’m informed by the principles of co-production (and my go-to co-production resource is itself co-produced and much more comprehensive than what I have space to cover here) and some of the key ones for my research practice are:
- There should be partnership from the outset (people with lived experience should not be brought in after project planning has finished, and should not be privy to less information or resources than other partners);
- Power differentials should be acknowledged, explored, and addressed (and this may require ongoing challenging of dominant, ingrained power roles throughout the life of the project); and
- Lived experience leadership and capacity should be developed (people with lived experience are thinkers and doers – not just passive recipients of care – and thus need to be valued for this wisdom).
- To be considered co-production, all stages of the process must be conducted collaboratively. Too often I see traditional mainstream researchers setting research agendas and planning studies without collaborating with consumers until later on in the piece.
As we know, psychology has a long history of doing things ‘to’ or ‘for’ people rather than ‘with’ people. It was pleasing to see the American Psychological Association recently publish an apology for its role in “promoting, perpetuating, and failing to challenge racism, racial discrimination, and human hierarchy”. But this is just one way in which the history of our profession is entwined with systems of oppression. Indeed, the goal of many critical health psychologists is to redress such systems that have marginalised various groups including people who are not heterosexual, not male, not white, disabled, poor, and/or colonised Indigenous people.
One paradox that has fascinated me for some time is that psychology often sees itself (and is seen) as the “expert in mental health” – but it also more-often-than-not excludes people with lived experience of mental ill health from its epistemic processes and clinical practices, denying them their experiential expertise. True co-production would value such expertise in the same way that mainstream disciplinary knowledge is valued. One very memorable quote from a research participant talked about how having experienced mental ill health was like a “sneaky special degree in personal experience”. Until we genuinely consider this experience to be as important as our mainstream disciplinary knowledge, we will not be able to benefit from it (and in turn, I would argue that we limit our systems, organisations, and practitioners from achieving expertise in mental health).
I recently posted a thread on twitter that seemingly struck a chord with lots of people who had been burned by “FauxProduction” (i.e., research that claimed to be co-produced, but that did not really address power imbalances, and instead reproduced tokenism rife in health research). I’d been reflecting on recent grants rounds where I’d been a reviewer for a large number of grants that had “co-design”, “co-production” and “participatory action research” in the project descriptions (and sometimes even in the titles!) but in which there was often no evidence of:
- Consumers as members of the investigatory team,
- Collaborative processes embedded across projects (rather than relegated to a small or later piece of larger projects), or
- Acknowledgement of power or power imbalances.
In a recent issue of Qualitative Research in Psychology (that I had the privilege of guest editing together with ISCHP’s own Gareth Treharne, and the brilliant Sarah Gordon, a service user academic), we explore ways in which psychology research can be a site in which we redress power imbalances. The whole issue is great and worth reading through. For instance – there are examples of co-designing and co-authoring research with children, conceptualising a “third sphere” beyond traditional university / community spaces to bring about equitable collaboration, and great ideas about changing identities in collaborative spaces including a Confucian approach and a reflexive account of liminality within these identities.
I think this scholarship is key to our society because critical health psychologists generally want to practice acts of allyship through and beyond their work. While genuine acts of allyship are going to look a little different across contexts, there are some specific actions I think we can all do (regardless of current role, seniority, or access to resources), and I want to leave you with a call to go beyond thinking of consumers as participants in your research practice, and to instead ensure you collaborate and engage with consumers in epistemic practices.
I’ll leave you with some steps that I want you to take right now!
1. Read (and cite!) consumer-led or co-produced work.
Whenever I embark on a new project, I do a Google Scholar search for key terms and “lived experience researcher”, “co-produced”, and “autoethnography” to try and find any work available from these perspectives. In some disciplines this is more easily accessible than others. For instance mental health has an established and active community and it can be ‘easy’ to search for “lived experience mental health research” or “mad studies” compared to disciplines in which lived experience perspectives are less common. (Note I sometimes also include as a search term “public and patient involvement” but I am always a little uncomfortable about and critical of work that settles for engagement or involvement over decision-making and agenda-setting opportunities for consumers).
This is almost too trite to say – but it bears constant repeating. Listen to what people with lived experience in your field want from research partnerships. Make time to go and talk with community organisations, and seek opportunities to hear their perspectives. Avoid being the colonising researcher going ‘in’ to a community to ‘get’ data and leave.
3. Embed co-production in to your projects (and budgets!)
Just like any other researcher, consumer researchers should be remunerated for their expertise, work, and time. I understand that this can be tough – despite the first full-time consumer academic position being established in Australia more than two decades ago, it is still considered novel! There may not be any paid consumer academics in your field – and this requires ensuring that their collaboration on research projects are budgeted for where possible.
4. Form alliances with those who do have power.
Even if you don’t have access to resources to make this happen, keep talking to people who do. I’m always banging on about consumer leadership to anyone and everyone. Last year, this led to an invitation to lead the development of a triage process for ICU with 26 consumer, carer, and community groups during the COVID-19 pandemic. This isn’t something I would have been able to do without the endorsement of senior health officials – but it led to a triage system based on human rights and non-discrimination (something I haven’t seen in triage processes that weren’t developed in collaboration with consumers).
Don’t be afraid to not get it right the first time. Co-production takes time and concerted effort to get right. Every time I collaborate with consumers, I learn something new about collaboration. I think it’s much better to start somewhere (and get it wrong and learn how to do it better next time) than to be too scared to start at all.
About the author
Brett Scholz is the Secretary of the International Society of Critical Health Psychology, and a Senior Research Fellow and Senior Lecturer in the ANU Medical School at the Australian National University on Ngunnawal Country in Australia. For his commitment to facilitating consumer leadership in health policy, practice, education and research, he won the inaugural Impact with Communities Award in the 2021 ISCHP Award and the 2021 Tall Poppy Science Award from the Australian Institute of Policy and Science, and is a finalist in the Clare Burton Award for Excellence in Equity and Diversity in the 2021 ANU Vice-Chancellor Awards and the Health Services Research Awards from the 2021 Research Australia Awards. When he’s not busy co-producing and co-authoring research with consumers, he can be found eating/drinking all things matcha, or singing karaoke.