A new role for phenomenology in empowering patients based on quantitative evidence‐based research
Authors: Kenneth W.M. (Bill) Fulford, Marcin Moskalewicz, Giovanni Stanghellini
Journal: World Psychiatry (2025)

This piece illustrates the role of phenomenology in bringing a more nuanced understanding of the lived experience of patients' values (i.e., of what matters to them) within the remit of quantitative empirical medical research, thus contributing to patient empowerment. We first outline two exemplar studies – respectively, of mental illness and physical illness – and then discuss their wider significance for patient empowerment in evidence-based medical research underpinning the personalization agenda. Our first exemplar study illustrates the power of phenomenology to illuminate the lived experience of people with eating disorders. Persons with anorexia nervosa may value thinness and fasting ahead of life itself. Rules concerning food are not merely about fasting and thinness as partial aspects of life, but about the way to make one's life meaningful. They are not merely the consequence of cognitive distortions. Food has a moral value – it is a sin and a temptation. Fatness is indicative of laziness, lack of self-care and self-control. Thinness, by contrast, is more important than health, because it means self-achievement and self-realization. Starvation is the unique salvation practice, since it serves to achieve a stable sense of identity. In a series of publications, we found that these (to most people) incomprehensible values are readily interpreted through J.-P. Sartre's three-way phenomenology of the body. The essence of this interpretation is that the "visible" body, to which anorexic people attach so much value, takes on disproportionate importance because they only "feel" themselves through the gaze of others. This interpretation was validated using a phenomenological questionnaire1. We documented that feeling oneself through the gaze of the other is significantly more pronounced (effect size = 0.72) among patients with eating disorder (sample of 113 patients vs. 117 controls)2. Furthermore, a longitudinal observational study of 141 patients showed that higher levels of embodiment disorder predict diagnostic instability (odds ratio = 1.80), while its amelioration mediates the decrease in eating disorder-specific psychopathology (indirect effect: 0.67)3. These findings have therapeutic potential when creating the relational premises for overcoming the symptoms4. This series of studies illustrates the power of phenomenological theory not only to provide insights into otherwise obscure values underlying psychopathology, but to do so in a way amenable to empirical validation, following the methodological demands of evidence-based medicine. Understanding values is vital for the personalization agenda in mental health, because recovery is defined by reference to the values of the patient5. Clearly, there will be situations in which these values are irreconcilably at odds with those of other people (as in forensic psychiatry). However, in many other situations (as with eating disorders), understanding may be the first step toward reconciliation of values within recovery-oriented practice. The understanding provided by Sartre's phenomenology generates hypotheses about patients' values that – since they have been clinically tested through the resources of evidence-based medicine – provide a basis for recovery. There are many other areas of phenomenological psychopathology capable in principle of generating hypotheses susceptible to evidence-based validation. Oxford philosopher K. Morris was early in the field with her use of Sartre's phenomenology to illuminate the experience of body dysmorphophobia. Our second exemplar study illustrates similar results for bodily medicine achieved through a different aspect of phenomenology, i.e. its skills-based process. This focuses on the open observational stance instilled by training in phenomenology and captured in its concept of epoché (roughly, seeing clearly by stripping away pre-conceptions). The study illuminated lived experience, including patients' values, in women undergoing treatment for cancer, by drawing on the results of phenomenological research. Without an open phenomenological stance, the key finding – that women in this situation have increased awareness of and a deep need to speak about finitude6 – would not have come to light. The sequence of validation was broadly similar to our first exemplar study. A phenomenologically generated hypothesis6 was validated with oncological patients in a quota representative sample of 4407, 8. The research benefited directly from patient feedback in a consensual research design at both the qualitative and quantitative stages. The question regarding death had to be masked in the quantitative stage, which would not have been possible without direct feedback from patients on how to phrase it7. Indeed, without this feedback, the research would have been actively blocked by the local research ethics committee, on the (understandable but, as it turned out, misguided) grounds that such questions were too intrusive for women undergoing treatment for potentially terminal cancer. Empowered, however, as the patients concerned were as partners, they pointed the research towards what would prove to be the clinically relevant finding on their awareness of finitude – increased among 66.8% of respondents regardless of cancer type and the length of treatment7. Following the patient-generated qualitative hypothesis, it was also found that chemotherapy had a very large effect (Cohen's d = 1.66) on changing the felt pace of time from flying to dragging, with impacts on care8. We turn now to the wider implications of our exemplar studies for patient empowerment. At the heart of both studies is a shift of focus from surface-level abnormal experiences to the exploration of deeper and more nuanced psychopathological aspects of lived experience, including patients' values. This shift in focus serves as a necessary foundation for identifying novel therapeutic targets defined (in part but crucially) by patients' values (i.e., by what matters or is important to them), amenable to empirical testing, and, consequently, enhancing outcomes for the individuals concerned. Evidence-based medicine, according to this model, thus both delivers on and is enhanced by engagement with the patient's voice in research. In its contributions to such processes, phenomenology builds on secure foundations. We are, after all, not the first to emphasize the importance of the patient's voice in research: it is indeed some twenty years since the James Lind Alliance was established in Oxford with precisely this end in view (www.jla.nihr.ac.uk). Neither are we the first to build quantitative results on qualitative foundations: well-established social science methods support this move. There remain, it is true, barriers to implementation: our second exemplar study illustrates one such barrier from (perhaps surprisingly) bioethics. These barriers are, of course, not unique to phenomenology. Indeed, as our second examplar study again illustrates, by carefully adjusting to the patients' usually hidden needs, phenomenology may have a role to play in overcoming them. This could be important for the wider problem of translation in the neurosciences: here, too, empowering the patient's voice in research could prove decisive9. To the extent that, as our exemplars suggest, phenomenology has a role to play in empowering the patient's voice in research, it holds a potentially key function across the board in advancing the personalization agenda of clinical care.