Patient-reported measures may not be as patient-centred as they seem

Patient-reported outcome measures have become one of the most promising tools in modern mental health care. By asking people who use services directly about their symptoms, functioning, wellbeing or quality of life, these questionnaires promise a structured route for patient voices to enter clinical encounters, service evaluation and health-system decisions. In a new Perspective article published in Frontiers in Health Services, a team of researchers from Denmark, the United Kingdom and Norway argues that this promise conceals a deeper problem: patient-reported information is not necessarily patient-centred, and the persistent difficulties in putting these measures into routine practice cannot be solved by better technology or training alone.

The authors, led by Stine Bjerrum Moeller of the University of Southern Denmark and Lillebaelt Hospital, together with Mike Slade of the University of Nottingham and Nord University, Helene Speyer of the University of Copenhagen and Copenhagen Research Centre for Mental Health, and Lotte Kring, introduce the concept of epistemically reflexive measurement practice. The framework is designed to make visible how authority over knowledge is distributed across the entire measurement process, from deciding what gets measured in the first place to determining what happens to the resulting scores in clinical and organisational decisions.

The central distinction the article draws is deceptively simple. A patient-reported outcome measure, or PROM, is defined by the fact that the information is reported by the patient, which represents an important shift away from relying exclusively on clinician observation. Yet most standardized PROMs still ask patients to respond within domains, items and response categories determined in advance. Even when patients have contributed to instrument development, that collective involvement is distinct from an individual patient determining the content of their own outcome assessment. What happens after responses are provided, how they are interpreted, weighted relative to other knowledge and used in decisions, depends on the practices and systems in which measurement occurs. A patient can therefore provide all the responses while exercising relatively little influence over what is considered relevant knowledge or what follows from it.

The researchers argue that much of the implementation literature has treated PROM difficulties as technical problems of uptake, integration and sustainability, mapping barriers and facilitators and recommending strategies targeting training, workflows, technology, feedback, stakeholder engagement and organisational support. These strategies address important conditions for implementation, but they assume implementation is a technical challenge requiring process-based solutions. Patients and clinicians, however, also raise concerns about whether standardized measures adequately capture clinical complexity, how responses influence treatment decisions and how measurement enters the therapeutic encounter. Such concerns point to questions that accompany implementation: what kind of knowledge is being embedded in routine care, for what purpose, whose priorities it represents, and how it should relate to other forms of knowledge.

The limits of an implementation-only perspective become particularly visible when PROM systems are technically workable but still fail to acquire a meaningful role in clinical practice. The authors draw on their published studies of PROM implementation in trauma-focused mental health services for refugees. Although technical usability was generally acceptable, PROM use remained uneven and clinicians reported limited contribution to clinical insight and personalised care. Concerns centred less on operating the system than on how systematic measurement related to individual circumstances, therapeutic relationships, professional judgement and immediate clinical priorities. The question was therefore not simply whether clinicians could use information from the PROMs, but whether the knowledge generated through the measures could be made meaningful within clinical work and related to patients’ own experiences and clinicians’ existing understanding of their patients.

To capture this tension, the authors employ the concept of epistemic fit, the level of alignment between the knowledge logics embedded in PROMs and the ways patients and clinicians understand, value, weigh and use different forms of knowledge in care. Their empirical findings indicate that epistemic fit is problematic in PROM implementation in complex mental health care. Standardized measurement produces systematic and comparable information, whereas clinical encounters must also respond to the particular person and context. This reflects a longstanding tension between nomothetic and idiographic orientations in mental health outcome measurement. Patients may identify problems, circumstances and desired changes that correspond only partly to predefined measurement domains, while clinicians may draw on relational, contextual and professional knowledge that cannot be reduced to a score. Limited epistemic fit arises when these forms of knowledge remain disconnected or when their relationship and relative authority are left implicit.

Importantly, the authors caution that epistemic fit should not become another implementation variable to be maximised, since complete alignment is neither possible nor necessarily desirable. A standardized score may reveal a pattern that challenges a clinician’s impression; a patient’s account may challenge what a scale appears to indicate; professional knowledge may alter the significance attributed to both. Epistemically reflexive practice therefore does not seek to eliminate such tensions but makes them available for examination by asking what kinds of knowledge are being produced, made visible and privileged, how they relate to one another, and how differences between them are negotiated. A sociomaterial perspective reinforces that measures are neither neutral containers nor autonomous determinants of practice: their design shapes what becomes visible and actionable, while what data do depends on how they enter relationships, technologies, routines and organisational requirements.

The article also highlights a troubling pattern that emerges when patients are perceived as vulnerable. In the study of trauma-affected refugees, clinicians sometimes adapted, postponed or omitted PROMs because of concerns about burden, distress or disruption of the therapeutic relationship. Such decisions may reflect thoughtful and ethically responsive care, but they illustrate how decisions about measurement also shape whose knowledge enters care. Protection can become a form of epistemic gatekeeping if patients considered especially vulnerable are given fewer opportunities to contribute to the knowledge used to understand their situation and evaluate their care. Neither rigid procedural administration nor unrestricted clinical discretion resolves this tension, the authors argue; epistemically reflexive practice instead asks who determines when participation is appropriate, what alternatives are available, and how protection and participation can be negotiated with patients rather than exclusively on their behalf.

To make epistemic reflexivity operationally clearer, the authors distinguish four domains of the measurement process in which epistemic authority is distributed: defining the measurement frame, defining personally relevant outcomes, eliciting patient-reported information, and interpreting and acting on PROM data. In the first domain, a scoping review of 193 PROM development studies found that patients were commonly involved in item development and comprehensibility testing, whereas involvement in deciding which outcomes should be measured was considerably less common. Personal recovery illustrates the distinction particularly clearly: recovery-oriented practice understands recovery in relation to a person’s own aspirations, values and understanding of a meaningful life, yet when personal recovery is translated into a standardized measure, the instrument necessarily specifies in advance which dimensions of recovery will be represented and how they will be assessed across individuals. Such measures can make important dimensions of recovery visible and broaden assessment beyond symptoms, but they do not determine what recovery is or which aspects matter most for a particular person.

In the second domain, individualized or idiographic PROMs allow patients themselves to influence the content to be tracked over time, for example by identifying personally significant problems, goals or areas of change. The instrument PSYCHLOPS provides one example: rather than asking every patient to rate an identical set of symptoms, it invites individuals to identify the problems that most concern them. In a comparison of 107 patients in psychiatric and addiction settings, 95 percent identified at least one PSYCHLOPS concern not represented in the Patient Health Questionnaire-9, and 71 percent identified at least one not represented in the Clinical Outcomes in Routine Evaluation–Outcome Measure. The significance, the authors stress, is not that individualized measures are intrinsically superior, but that reporting on predefined outcomes and contributing to defining the outcome can produce different knowledge. Standardized PROMs provide common content that supports comparison, aggregation and population-level monitoring, whereas individualized approaches are better positioned to capture personally significant problems and personally meaningful change; used complementarily, they can make both common domains and individually valued outcomes available to inform clinical decision-making. Individualized measures should not be treated as inherently patient-centred either, since they too structure what can be expressed, translate experience into measurement and enter systems that determine how much influence the resulting information receives. In the third and fourth domains, the conditions under which patients are invited to report, including how a PROM is introduced, whether its purpose is clear and whether assessment burden is manageable, shape what patients are able and willing to articulate, while PROM scores do not determine their own clinical meaning: a change that appears small according to a standardized score may be highly significant to a patient, and improvement on a predefined outcome may coexist with deterioration in something the person values more. The authors conclude that completion rates, missingness, usability and data quality remain important, particularly where measurement serves service evaluation or population monitoring, but these indicators cannot establish whether PROMs contribute meaningfully to person-centred care. Implementation must instead attend to what happens to the knowledge produced, not only whether the measure is completed, and future research should examine how epistemic authority, participation and influence are distributed across these domains in different mental health settings and for different purposes of measurement.

Subject of Research: Epistemic authority in patient-reported outcome measurement in mental health care

Article Title: Beyond implementation barriers: toward epistemically reflexive patient-reported outcome measurement in mental health care

Article References: Moeller, S. B., Slade, M., Speyer, H., & Kring, L. (2026). Beyond implementation barriers: toward epistemically reflexive patient-reported outcome measurement in mental health care. Frontiers in Health Services, 6, Article 2016521. https://doi.org/10.3389/frhs.2026.2016521

Image Credits: AI Generated

DOI: 10.3389/frhs.2026.2016521

Keywords: patient-reported outcome measures, PROMs, mental health care, person-centred care, epistemic authority, epistemic reflexivity, outcome measurement, recovery-oriented practice, implementation, individualized measures, PSYCHLOPS, epistemic fit