How is research into people’s subjective experiences of depression, anxiety and psychosis conducted, valued and integrated more broadly within mental health research?
A straightforward question? Not really.
We’ve been grappling this question for the past ten months, as part of an exploratory project commissioned by the Wellcome Trust. In this blog we explore our current thinking, which is work in progress.
We’d love to hear from others interested in this topic: researchers working in mental health from phenomenologists and neuroscientists to sociologists and experimental medicine academics. Help us explore this important area of research work.
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Surrounded by subjective experiences
Our starting position for exploring how subjective experience is understood through research was our own work. The team includes an independent survivor researcher, academics working in medical humanities and psychology, and lived experience researchers based in a charity.
It’s clear that everyone is influenced by the subjective experiences and personal narratives of others and themselves: we watch films, listen to podcasts, read books, talk to friends, or as clinicians listen to patients. First person narratives shape how we view a situation, affecting our emotions, motivating us, influencing the decisions we take including our research careers. Hearing about other people’s experiences (in this case about mental health) drives curiosity– which is a key ingredient for science. Subjective experiences research can help identify relevant socio-cultural factors, surface environmental and historical context, as well as provide a multiplicity of perspectives that lead to more holistic and useful findings or interventions.
And yet, research into subjective experience is not as prominent or as impactful in mental health science as we feel it could or should be. The work that is undertaken is also often focused on Western contexts. Some of the questions this raised for us included, is this due to publishing processes? Accessibility of literature? Terminology? Or disciplinary differences in geographic context, methods and theory?
Subjective experiences shape how we think, feel, and act; including how we do research.
The value of different forms of evidence
As for the term ‘subjective experiences research’, my only concern would be the connotations that ‘subjective’ implies ‘not real’, ‘not accurate’ or even ‘not accessible’ and this would reinforce the dichotomy in psychology between objective measures/subjective experiences.
We know subjective experiences research has a rich and important tradition in mental health, providing bodies of knowledge that shaped national and international policies. Seminal studies like Goffman’s work on asylums (1961) and Estroff’s work on disabling processes by society (Making it Crazy, 1985) use sociological and ethnographic approaches. But this type of work is not always visible in the hierarchy of scientific research evidence underpinning health policy decisions that traditionally values the science of systematic reviews and randomised controlled trials above all other research methods. But where does that leave survivor research, longitudinal qualitative research, or narrative reviews based on qualitative studies using interpretive phenomenological analysis? With a pressing need to come out of the shadows and into the sunlight.
Evidence hierarchies often leave experiential and qualitative work undervalued.
Side stepping binary conceptualisations – the objective and subjective
We need to be able to measure things, but we also need to be able to contextualise those measures with all the sources of information. So, I don’t really like the binary, subjective/ objective thing that’s implied by calling experience subjective.
We found out very quickly through convening diverse international and theoretical perspectives that we had entered complex territory. The framing of the work as ‘subjective experiences’ caused difficulties. What experience – whether individually or collectively presented – is not ‘subjective’? Different terms were suggested as alternative scaffolding for our exploration: first person narrative and accounts, lived experience and phenomenology. Also, the term subjective immediately suggested an oppositional stance to the ‘objective’ which for many is a false binary. We were also asked if the measurement of subjective experiences and literatures around PPI (patient and public involvement) were within brief. For the team, integration of different forms of knowledge was an underpinning thread so all research was ‘in brief’ until it had been scrutinised and collective agreement deemed a piece of work was ‘out of scope’.
Integrating diverse knowledge sources is crucial — experience cannot be neatly separated into subjective or objective.
Subjective experiences within AVATAR
We explored examples where subjective experiences had been successfully integrated into mental health science. One interesting example is AVATAR therapy, for voice hearing – a model in which the person receiving therapy sits in front of a computer which displays an avatar. This avatar has been created together with the therapist, whilst the therapist speaks either as themselves or as the voice. They encourage the person to converse with their voices and to gradually assume more power in the engagement. AVATAR has been shaped by subjective experiences of people with psychosis and the belief that voices are not simply a symptom of psychosis, but ‘rather a very meaningful, often personified, relationship’ (interviewee), are at the heart of the therapy.
We found most of the research evaluating AVATAR therapy so far follows the conventional methods for intervention development and randomised controlled trials, and work focused on specifically researching subjective experience was a smaller element of the study. However, in AVATAR2, the second research trial, there was nested qualitative research that sought to better understand how the therapy process worked. The involvement of people with lived experience in the qualitative research helped in broadening the researchers’ understanding of voice hearing and the impact of the therapy beyond symptom reduction.
…rather than just looking at the voices themselves in isolation: what it is to live with that 24/7 – what that means in terms of relationships, what that means in terms of your day to day, what that means in terms of medication and what you take that medication for, but then also looking at the Avatar intervention itself and rather than just, ‘has it helped your voices’, but has it changed anything else in your life? Is there anything else that has been affected?
This highlights the significant impact that subjective experiences can have – and draws attention to the potential in expanding this type of research. In phase three AVATAR is working with phenomenologists, and we look forward to seeing the learnings and impact of this addition to the research.
AVATAR therapy puts lived experience at the heart of both treatment and research.
Translating research into real world impact – might integrating more subjective experiences research help?
There’s a shift going on to understanding that knowledge exchange, knowledge transfer is key in global research now. Also, we have a lot to learn from different ways of thinking and doing.
There is no clear agreement on what types of research and research methods constitute meaningful engagement with subjective experiences. Rather than despair we could see this as an opportunity for innovation and creativity, and better engagement with the people who live with mental health issues. Cross disciplinary integration that embeds subjective experience may provide us with projects that more closely connect with questions that matter in practice. One of the examples we looked at, the Institute of Mental Health Birmingham, highlights the potential in integration:
So although we are embedded within the School of Psychology, next to me I’ve got social scientists psychiatrists. health economists, public health. We cannot address key social health and public health problems on the basis using our disciplinary silos.
By undertaking research that starts with asking people how do you feel, what do you remember and how do you make sense of your own mental health issues, we can increase trust in research and researchers. Hopefully, this will strengthen our science with more diverse participants and deliver more useful and relevant research to implement changes in practice. We know that context is vital and as we move closer to personalised healthcare, understanding individual experiences will be even more important.
Breaking silos: interdisciplinary work is key to meaningful mental health research.
Where next? Calls to action
A few thoughts from the team based upon our work to date but we need help refining these recommendations.
1. Please complete our survey
Our work has tried to explore what the field understands by subjective experiences research. We would love to hear from a diverse group of academics. You too can contribute by completing our survey.
2. Embed more experiential knowledge within research teams
Most ‘subjective experiences research’ does not currently work with experiential knowledge embedded within the research team or led by survivor researchers. We noticed most of the literature we uncovered was authored by teams led by psychologists and did not include lived experience researchers or advisors. This seems to be changing, with more studies published since 2020 having authors working from a lived experience perspective but they are still a minority. Subjective experience research approaches are an opportunity, and a way to bring lived experience collaborations into research teams, an aspect of research increasingly supported by mental health funders.
For me, the work I’ve done where I’ve worked in collaboration with people with lived experience of the difficulties, I’m researching has been absolutely crucial because it helps me to think about things I might not think about – it addresses my blind spots. …. I’ve learnt so much from working with people with lived experience. When it comes to analysis as well, I will notice something in the data and someone with lived experience will notice something different. And I just think that’s so rich.
3. Developing subjective research methodologies, including analysis strategies
Some research methods stay closer to the essence of subjective experiences and thus further work to develop this field of science would be useful. We found the science of phenomenology, and studies using Interpretive phenomenological analysis, easy to ‘mark’ as subjective experiences research. Other studies were far harder to discern, particularly where content analysis and deductive framing was used in qualitative research that was closer to intervention or treatment development than exploring illness experience.
We have heard from researchers around the world about the power of creative methods – including photovoice elicitation – to work closely with people’s subjective experiences on their own terms. Research lends itself to aggregating data, producing a collective synthesis of individual’s own experiences –, whilst using creative methods provides space and depth to explore experience respective to individual research participants and their unique context.
I think for researching subjective experience, we do have to think more broadly about more creative methodologies, ways that are more under the control of the people themselves; the participants have some control over their narrative and the way that’s expressed, so broadening out what’s seen as legitimate and credible, into how people express themselves and their stories, their feelings and experiences in poems, stories, art, things like photovoice, those kind of approaches.
4. Supporting work exploring subjectivity, producing guidelines and resources for a diverse range of researchers
We have found it hard to define ‘subjective experience research’. It is understood as a field of work but the boundaries are fuzzy as what it is and isn’t. It might be useful to have a check list with dimensions for researchers to follow, like those provided for Citizen Scientists, another emerging field in mental health science. Or guidelines for what constitutes engagement with this research methodology. This is not to close down the field but open it up – with neuroscientists, public health academics, medical sociologists, geographers, epidemiologists, experimental medicine specialists all contributing to a multi-disciplinary approach relevant to their own methods and disciplines.
Have your say
Please complete our 15–20 minute survey by 28 July 2025 to share your perspective.
🔗 More information on The SUNRISE Project
📧 Contact: Tanya Mackay
Acknowledgements
The SUNRISE study is led by the McPin Foundation in collaboration with the Discovery Research Platform and Institute for Medical Humanities at Durham University and Dr Alison Faulkner, Independent Survivor Researcher. We thank the co-authors of this blog: Dr Alison Faulkner, Roya Kamvar, Dr Veenu Gupta, Amber Jarvis, Professor Angela Woods and Professor Benjamin Alderson-Day.