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- Convenors:
-
Carina Pittens
(VU University Amsterdam)
Maurice Remy (VU Amsterdam)
Olga Zvonareva (Maastricht University)
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- Format:
- Traditional Open Panel
Short Abstract
The field of patient and public involvement (PPI) is confronted with challenges such as tokenistic inclusion and tensions between standardization and context-sensitivity. The panel seeks to open a dialogue on the possible futures for PPI and explore how STS can help shape them.
Description
Over past decades, patient and public involvement (PPI) has become a defining feature of health research. It is now embedded in funding requirements, institutional frameworks and ethical discourses that emphasize knowledge co-production and inclusion. Yet despite this institutionalization and methodological innovation, persistent challenges remain: e.g. tokenistic involvement, epistemic injustices reinforced through professionalisation of patient representatives, tensions between standardization and context-sensitivity, and the difficulty of sustaining meaningful involvement within increasingly managerial and neoliberal research environments.
A central theme running through these debates is the inclusion challenge. Efforts to promote inclusion are guided by commitments to justice and representativeness. Yet, as STS scholars have shown, such efforts can reproduce exclusionary logics by reifying categories of the underserved. Inclusion strategies often reaffirm assumptions about who is recognized as a legitimate participant and whose knowledge is valued. This challenge raises the question of how PPI futures might be imagined differently — beyond inclusion as representation towards more relational, context-specific, and reflexive involvement forms.
This call for reflexivity and contextual sensitivity leads to a second theme: the tension between standardized frameworks and reflexivity in local contexts. The proliferation of checklists and guiding principles aims to ensure legitimacy and coherence but may obscure locally embedded values and everyday negotiations that give involvement meaning in practice. Standardized tools also encode specific versions of PPI, masking them behind claims of neutrality or efficiency, generating frictions between competing versions of PPI. With growing involvement of commercial actors such as pharmaceutical companies in defining PPI through standardization, we see how those powerful enough to set standards can marginalize more relational and reflexive approaches. How might critical scholars sustain spaces for reflection and co-learning within these contexts?
Through these interconnected themes, the panel seeks to open a dialogue on the possible futures for PPI and explore how STS can help shape them.
Accepted papers
Session 1Paper short abstract
Based on interviews and observations, we explored the institutional work conducted by actors working to improve the inclusion of experts by experience and address epistemic injustice in decision-making processes in (mental) health care.
Paper long abstract
The involvement of experts by experience in decision-making processes can be helpful for developing person-centered approaches to (mental) health care (Petit-Steeghs, 2019). Integrating experiential knowledge in these processes has, however, proven difficult. Experts by experience face both the undervaluing of their knowledge and of themselves, as ‘knowers’ (Fricker, 2007; van Os et al., 2021). To overcome this undervaluing demands institutional support (Scholz et al., 2019). However, little is known about the institutional work that goes into making space for the involvement of experts by experience. Therefore, we investigated how actors work to address epistemic injustice in decision-making processes.
In our contribution, we explore institutional work done to increase the participation of experts by experience in regional projects aimed at improving support for people with misunderstood behavior in the Netherlands. ‘Misunderstood behavior’ is a term used to describe the people that Dutch police register as ‘disruption by confused person’ (Petit-Steeghs et al., 2021). We observed project meetings with and about experts by experience (n=24) and interviewed (n=17) both experts by experience and other actors involved in the regional projects.
Preliminary findings identified different types of institutional work. Using van der Heijden et al.’s framework (2025), we were able to identify relational, conceptual, structural and operational work, which happen simultaneously and affect each other. For example, actors work to establish new belief systems and norms through challenging their colleagues’ tokenistic assumptions about inclusion. This institutional work helps to address epistemic injustice and improve the inclusion of experiential knowledge in decision-making processes.
Paper short abstract
This study presents a case of infrastructuring patient involvement in medical ethics review. Out of concern for complementary and retrenching effects, we aim to understand how questions about patient involvement in review application forms can be employed for transformation.
Paper long abstract
In health research systems in the Netherlands, we have seen an expansion of infrastructure for patient involvement over the past two decades. Based on both moral and epistemic grounds, the idea that good research requires the involvement of patients seems to be gradually welcomed in medical, scientific, and regulatory institutions. While some believe patient involvement can transform research systems to become more democratic and needs-oriented, there is also a risk that it merely complements established routines or even retrenches epistemic and political hierarchies. Using the notion of Star & Bowker (2002), we dive into a particular case of infrastructuring patient involvement: Embedding patient-involvement questions as part of the assessment and registration form of new proposals into the routines of medical ethics review in the Netherlands. Out of concern for complementary and retrenching effects, we aim to understand how to this infrastructure can be employed for transformation of review and research practices. We draw on participatory ethnographic data, collected during fieldwork at the national office of the Dutch Central Committee for Research Involving Human Subjects (CCMO) by taking part in their Patient Involvement Program. While actors broadly attach value to the abstract notion of patient involvement in medical-scientific research, they reconcile their own goals and practices with the materiality of the questions in the form, constrained by the systemic structures that bound their agency. Unpacking practices, rationales, and (anticipated) effects of the patient involvement questions, we delineate distinct repertoires of employment, which complement, retrench, or transform ethical review routines.
Paper short abstract
Patient expertise is a complex concept that encompasses a wide range of knowledge and skills and varies across different medical fields, healthcare settings and actors involved. My article focuses on the multiple patient expertise and the processes of expertisation of patients in Switzerland.
Paper long abstract
Very little is known on how patient expertise is made in practice and on how it is recognised in certain settings and not in others. If patient and public involvement (PPI) in research and healthcare has gained prominence, there are remaining ambiguities and debates about what kind of expertise is deemed valuable within institutional settings of care, what kind of expert these patients are and who and how we qualify them. Current frameworks often homogenise/standardize patient knowledge as a singular and subjective phenomenon, obscuring its speciality and contextual diversity. Their expertise is frequently flattened into generic “lived experience” and “experential knowledge”. Patient expertise is not monolithic but a constellation of embodied knowledge, technical skills and political labor.
To move beyond the current debate, institutional frameworks and ethical discourse encouraging PPI, my project aims at ethnographically exploring: what forms of patient knowledge gain legitimacy and through what institutional mechanisms? How do cultural, political and medical specialisation contexts shape whose expertise is recognised? How does the institutionalisation and professionalisation of such patient experts reinforce (or not) social inequities? In this paper, I will look at patient expertise as a complex and multiple concept including many knowledge and skills and differences across different medical fields, health settings and actors involved. I wish to deepen our understanding of which aspects of patient knowledge are valued, in which contexts and which collaborations are feasible and imagined in different healthcare settings in Switzerland. I will also highlight the frictions, tensions and negotiations involved in these processes.
Paper short abstract
By shifting attention from participation to the epistemic conditions that make experiences speakable and institutionally actionable, this paper contributes to ongoing discussions about inclusion, representation, and the limits of institutionalized forms of involvement.
Paper long abstract
Debates on patient and public involvement have focused on how patients can be included in knowledge production, decision-making, and research governance. STS scholars have productively troubled these developments, showing how participation frameworks reproduce hierarchies of expertise, privilege certain forms of knowledge, and professionalize patient representatives in ways that narrow participation (e.g., Epstein, 1996; Martin, 2008; Callon, Lascoumes, & Barthe, 2009). It has also been demonstrated that participation depends on the articulation of issues around which publics can gather, and how certain concerns fail to achieve such articulation (Marres, 2007).
This paper takes a well-trodden path upstream to ask a familiar question: what forms of experience remain difficult to articulate in the first place? Studies of invisible labour show how crucial domains of activity evade formal recognition because they are embedded in routine infrastructural arrangements (Star & Strauss, 1999). Drawing on participatory research conducted in a forensic psychiatric clinic, including a patient advisory council, the paper examines a domain of everyday work that profoundly shapes patients’ lives yet lacks a stable language through which it can be recognized or contested. While formal discussions of coercion focus on legally defined interventions, patients’ ongoing experiences are structured by far more mundane practices. Issues raised in the patient council frequently appear “small,” yet closer examination shows that they touch on fundamental aspects of personhood. They are thus simultaneously too minor to easily become agenda items and too fundamental to be comfortably contained within institutional participation frameworks.
Paper short abstract
Clinical research seeks to include underserved and underrepresented populations, yet these terms lack standardized definitions. Drawing on the READI project, this paper examines how definitions shape inclusion and patient engagement, revealing tensions between fixed categories and changing contexts.
Paper long abstract
Efforts to broaden participation in clinical research increasingly emphasize the inclusion and engagement of underserved (US) and underrepresented (UR) populations. Patient engagement is often promoted as a strategy to improve inclusion in research processes, from study design to recruitment and implementation. However, such efforts depend on how US and UR populations are defined and identified, as well as broader understandings of inclusion. Despite their widespread use in policy documents, clinical trial design, and patient engagement initiatives, these terms lack standardized definitions.
This paper examines how US and UR populations are defined within clinical research and how these definitions shape inclusion and patient engagement efforts. Drawing on findings from the European research project READI, including a literature review and qualitative interviews with stakeholders involved in clinical studies across Europe, the analysis reviews how these terms are defined across clinical research literature and trial contexts, revealing variation in how populations are identified and operationalized.
These definitional differences create misalignment in how populations excluded from clinical research are identified and included. Because engagement initiatives frequently target groups labeled US or UR, variations in definitions influence which communities are approached and how engagement strategies are designed. While defining populations enables recruitment and engagement, it also fixes particular understandings of who counts as underserved or underrepresented, potentially leaving other populations outside the frame.
The paper contributes to STS debates on participation and classification by highlighting tensions between defining populations for inclusive engagement and the context-sensitive nature of who becomes US or UR in clinical research.
Paper short abstract
This paper discusses tensions between the promises of empowered patienthood in the context of medical digital twins and the current passive roles assigned to patients. By proposing a socio-technical lens, it highlights the need for cross-disciplinary reflection on underlying values and assumptions.
Paper long abstract
This paper reflects on institutional aspirations of digital patienthood in the development and implementation of digital twins in healthcare settings. Medical digital twins are presented as personalized and dynamic computational representations of human health and disease states. Drawing on empirical observations from extensive focus group conversations with modelers involved in different European research projects on digital twins, this paper explores observed tensions between future ‘empowered’ visions of digital patienthood and the current ‘data subject’ roles afforded to patients.
In anticipatory dialogues, medical digital twins are introduced in terms of their transformative power, promising to reshape what it means to be, and through predictive modeling, to become a patient. The tools promise to render care relationships more equal and enable patients’ active participation in decision-making. However, this contrasts sharply with current practices, where patients, perceived as ‘fallible’, occupy rather passive, data-contributing roles, with limited agency in shaping research agendas or model design. Largely, these apparent misalignments between practice and vision go unnoticed by developers, which raises important questions around their understanding of ‘empowerment’ and how this translates into engagement practices.
This paper adopts a socio-technical perspective to reveal, understand, and reflect on how not only technical and economic constraints, but also institutional assumptions and underlying values co-shape the extent and nature of patient involvement in medical digital twin research. This work explores what being ‘empowered’ entails from the perspective of those developing the technologies, and reflects on how these visions shape concrete engagement practices and the future organization of patient involvement.
Paper short abstract
This paper aims to fill a gap in the literature by positioning epistemic injustice in participation issues with disease metaphysics to help patients shape the meaning of the concept of disease in their own disease process.
Paper long abstract
Patients can now engage in various levels and stages of medical decision-making, the limitations of existing participation models have become a critical area of study. Within frameworks analyzing obstacles to participation, patients’ self-definition in the individual conceptualization of disease remains a neglected issue. The paper problematizes epistemic aspects of participation within disease metaphysics, about epistemic injustice, and linguistic division of labor. While the standard view of disease acknowledges patients’ expertise in relation to the concept of disease, this involvement is limited to shaping the concept of illness, which holds a translational relationship to disease. In this translational relationship, illness needs to be translated into the “expert” language that is built around disease and biomedical vocabulary. In this framework, illness is reserved for personal meaning and notion. I will support the linguistic and epistemic claim metaphysically through evolutionary medicine. At the metaphysical level, evolutionary medicine posits that what humans have evolved is disease vulnerability, not disease itself per se. This perspective offers a research program that reimagines metaphysics of disease. I will connect this to, recent work in the philosophy of medicine that argues, health can be considered a secondary property, similar to disease vulnerability being prior to disease instances. By combining these two perspectives; the primacy of disease vulnerability in evolutionary medicine and the notion of disease as a secondary property, the concept of disease can be epistemicly reconstructed to enable patient participation within epistemic division of labor.
Paper short abstract
This paper examines co-development of a Patient Experience Pathway for decentralized clinical trials. Drawing on engagement with patients and stakeholders, it explores how interconnected concerns around microsampling shape efforts to translate patient engagement into inclusive trial participation.
Paper long abstract
Patient and public involvement (PPI) has become increasingly institutionalized in health research through governance frameworks, funding requirements, and ethical commitments to inclusion. Yet scholars in science and technology studies (STS) have highlighted tensions between participatory ideals and the challenges of translating patient engagement into meaningful changes in research design and implementation.
This paper examines the co-development of a Patient Experience Pathway within the European context, which seeks to support more inclusive decentralized clinical trials through patient-centric microsampling technologies. The pathway is being developed through engagement with multiple stakeholders, including patients, healthcare professionals, researchers, industry partners, and regulators to gather perspectives on patient experience in decentralized trial settings.
Drawing on qualitative research and stakeholder engagement activities, we analyze the co-development process as a site where different actors articulate concerns and practical requirements related to microsampling and decentralized trials. Preliminary insights suggest that several issues such as confidence in sample validity or the need for tailored training are raised across stakeholder groups. These overlapping concerns highlight how implementing new trial models depends not only on incorporating patient perspectives but also on addressing broader clinical, technological, and organizational conditions.
By examining how these interconnected perspectives are translated into a structured pathway, the paper highlights how efforts to support inclusive participation in decentralized clinical trials involve meaningful patient engagement alongside consideration of clinical, technological, and organizational conditions. The analysis therefore points to the importance of negotiating perspectives across stakeholders to translate patient engagement into practices that can support broader and more inclusive trial participation.