Researchers and others involved in the research enterprise from 12 African countries met with those working in ethics and oversight in the United States as part of an effort to develop research ethics capacity. Drawing on a wealth of experience among participants, discussions at the meeting revealed five categories of issues that warrant careful attention by those engaged in similar efforts as well as international policymakers and those charged with oversight of research. (1) Principal investigators should build ‘true research teams’ (...) where members of the team are meaningfully involved in decisions regarding the protocol and its implementation. (2)There should be explicit discussion about the ‘standard of care’ at the outset of project planning that includes clarification of the terminology that is being used. (3) While internationally collaborative research may involve populations that have inherent vulnerabilities, it is important to recognize the limitations of host country solutions (such as elaborated consent processes) and look for means to negotiate appropriate protections for those willing to participate. (4) In conducting research involving biological materials it would be prudent to develop material transfer agreements at the outset of the study to clarify expectations and to minimize the likelihood of harm. (5) Those engaged in internationally collaborative research need to be alert to the potential conflicts of interests of host country ethics committees during the approval process and to take measures to manage them if they indeed exist. (shrink)

Some are concerned about the possibility that offering money for research participation can constitute coercion or undue influence capable of distorting the judgment of potential research subjects and compromising the voluntariness of their informed consent. The author recognizes that more often than not there are multiple influences leading to decisions, including decisions about research participation. The concept of undue influence is explored, as well as the question of whether or not there is something uniquely distorting about money as (...) opposed to a chance for treatment or medical care. An amount of money that is not excessive and is calculated on the basis of time or contribution may, rather than constitute an undue inducement, be an indication of respect for the time and contribution that research subjects make. (shrink)

Today’s exponential advancement of information and communication technologies is reconfiguring participatory urban development practices. The use of digital technology implies new forms of decentralised governance, collaborative knowledge production, and social activism. The digital transformation has the potential to overcome shortcomings in citizen participation, make participatory processes more deliberative, and enable collaborative approaches for making cities. While digital tools such as digital mapping, e‐participation platforms, location‐based games, and social media offer new opportunities for the various actors and may act (...) as a catalyst for renegotiating urban space and collective goods, digitalisation can also perpetuate or even attenuate existing inequalities and exclusion. This editorial introduces the thematic issue “Citizen Participation, Digital Agency, and Urban Development” which focuses on the trajectories and (dis)continuities of citizen participation through digitalisation and elaborates this with examples from Europe and Asia on how the digital transformation impacts, challenges, or reproduces hegemonic power relations in urban development. (shrink)

This paper aims to address when the wise person should participate in politics. The question is addressed through engagement with the Analects. Rather than provide interpretations of key terms in the Analects, we provide an account of wisdom that draws from themes in the Analects. The case is made that the wise person is committed to participating in politics primarily because of the connection between wisdom and benevolence (ren 仁 in the Analects). We address challenges to the Confucian approach from (...) the Zhuangzi concerning the potential harms of political participation. General political disengagement is not considered exemplary on the Confucian approach to wisdom, although when political engagement may be eschewed is explored. Finally, the case is made that while ren motivates the wise to participate politically, the wise also have a sense of timeliness that provides guidance as to when to refrain or withdraw from political participation. (shrink)

In discussion about basic theoretical approaches in a non-Cartesian psychology several candidates for a key concept were proposed, such as action, activity, relation, dialogue and discourse. None of these concepts, however, sufficiently grounds psychological theories of individual psychology in social practice. To accomplish this we need to conceptualize subjects as participants in structures of ongoing social practice. In this paper I argue why and address issues of subjectivity as encountered by persons in their participation in complex structures of social (...) practice. I introduce the concept of personal conduct of life and life-trajectory as elaborations of my theory. And I discuss this theoretical approach and show what is at stake in developing it by comparing it to similar approaches in the current literature on the person, self, and identity. (shrink)

On a proceduralist account of democracy, collective decisions derive their jus- tification—at least in part—from the qualities of the process through which they have been made. To fulfill its justificatory function, this process should ensure that citizens have an equal right to political participation as a respectful response to their equal status as agents capable of self-legislation. How should democratic participation be understood if it is to offer such a procedural justification for democratic decisions? I suggest that, in (...) order to overcome the structural procedural disadvantages affecting the actual, effective opportunities that citizens who hold nonmainstream views have to exercise their right to political participation, the enhancement of such opportunities requires securing space for contestation. Against this background, I vindicate the (currently underestimated) role of conscientious objection as a form of political participation. (shrink)

Background: Patient participation in clinical ethics support services has been marked as an important issue. There seems to be a wide variety of practices globally, but extensive theoretical or empirical studies on the matter are missing. Scarce publications indicate that, in Europe, patient participation in CESS varies from region to region, and per type of support. Practices vary from being non-existent, to patients being a full conversation partner. This contrasts with North America, where PP seems more or less (...) standard. While PP seems to be on the rise in Europe, there is no data to confirm this. This study sought a deep understanding of both habits and the attitudes towards PP in the Netherlands, including respondents’ practical and normative perspectives on the matter. Methods and Results: We developed a national survey on PP for Dutch CESS staff. Our survey comprised a total of 25 open and close-ended questions, focused on four topics related to PP goals of CESS, status quo of PP, ideas and ideals concerning PP, and obstacles for PP. Discussion: The four most important findings were that: Patient participation in Dutch CESS is far from standard. Views on patient participation are very much intertwined with the goals of ethics support. Hesitations, fears and perceived obstacles for PP were not on principle and Most respondents see PP as a positive opportunity, yet requiring additional training, practical guidance and experience. Conclusions: Various normative reasons require PP. However, PP seems far from standard and somewhat rare in Dutch CESS settings. Our respondents did not raise many principled objections to PP. Instead, reasons for the lack of PP are intertwined with viewpoints on the goals of CESS, which seemingly focus on supporting health care professionals. Training and practical guidance was thought to be helpful for gaining experience for both CESS staff and HCPs. (shrink)

Whether institutions and not just individual doctors have a right to not participate in medical assistance in dying (MAID) is controversial, but there is a tendency to frame the issue of institutional non‐participation in a particular way. Conscience is central to this framing. Non‐participating health centres are assumed to be religious and full participation is expected unless a centre objects on conscience grounds. In this paper we seek to reframe the issue. Institutional non‐participation is plausibly not primarily, (...) let alone exclusively, about conscience. We seek to reframe the issue by making two main points. First, institutional non‐participation is primarily a matter of institutional self‐governance. We suggest that institutions have a natural right of self‐governance which, in the case of health centres such as hospitals or hospices, includes the right to choose whether or not to offer MAID. Second, there are various legitimate reasons unrelated to conscience for which a health centre might not offer MAID. These range from considerations such as institutional capacity and expertise to a potential contradiction with palliative care and a concern to not conflate palliative care and MAID in public consciousness. It is a mistake to frame the conversation simply in terms of conscience‐based opposition to MAID or full participation. Our goal is to open up new space in the conversation, for reasons unrelated to conscience as well as for non‐religious health centres who might nonetheless have legitimate grounds for not participating in MAID. (shrink)

Contrary to the tendency to harmony, consensus and alignment among stakeholders in most of the literature on participation and partnership in corporate social responsibility and responsible innovation practices, in this chapter we ask which concept of participation and partnership is able to account for stakeholder engagement while acknowledging and appreciating their fundamentally different judgements, value frames and viewpoints. To this end, we reflect on a non-reductive and ethical approach to stakeholder engagement, collaboration and partnership, inspired by the philosophy (...) of Emmanuel Levinas. We contrast a cognitive approach with an ethical approach to stakeholder engagement, collaboration and partnership, and explore four characteristics of this ethical approach. Based on the ethical approach to stakeholder engagement, collaboration and partnership, we also provide a three-stage framework for partnership formation in CSR and RI practices. (shrink)

Parental participation has gained significant attention in environmental psychology, which has revealed a need for an instrument that can measure parental participation with children regarding environmental issues. The present study met this need by validating the parental participation in the environment (PPE) scale. This process began with 45 Chinese parents participating in an individual interview and group discussions, which helped generate a list of eighteen parent-child environmental activities. The activities were then modified and validated in the current (...) study with a diverse group of 969 parents recruited from six major Chinese cities. Both score structure evidence and generalizability evidence were obtained within this sample, and psychometric tests suggested a single factor construct with nine items. Once the PPE scale was revised, it showed measurement invariance across the parent who responded to the items (mother vs. father), across the child’s primary caregiver (mother vs. father vs. grandparent), across the family’s living region (North China vs. South China), as well as across the family’s income group. Finally, evidence based on relations to other variables showed a relationship among parents’ PPE, pro-environmental behavior, and connectedness with nature. As a result, the study provided a novel measure to assess pro-environmental socializationviaparental participation. (shrink)

This study evaluated the relationship between participative management practices and institutional goal attainment among Nigerian universities, with University of Calabar in focus. To achieve the purpose of the study, two research questions and two null hypotheses where developed to guide the study. The descriptive survey research design was adopted for the study. The population and sample of the study was one hundred and twenty-two (122) deans of faculties and heads of departments using the census approach. An instrument titled Participative Management (...) Practices and Institutional Goal Attainment Questionnaire (PMPIGAQ) was used for data collection. The instrument was validated by three experts in Higher Education Administration and Measurement and Evaluation. The instrument yielded Cronbach’s reliability alpha ranging from α=.75-86. Data were collected and analyzed through mean, Standard deviation, Pearson Product Moment Correlation Analysis. The results of the study showed that there is a significant relationship between participation in decision making, participation in planning and institutional goal attainment. It was recommended that managers of universities should promote participatory management practices to enhance high morale, commitment and enthusiasm among staff in the pursuit and attainment of institutional goals. (shrink)

The inclusion of attendance and participation in course grade calculations is ubiquitous in postsecondary syllabi, but can penalize the silent or anxious student unfairly. I outline the obstacles posed by social anxiety, then describe an assignment developed with the twin goals of assisting students with obstacles to participating in spoken class discussions, and rewarding methods of participation other than oral interaction. When homework assignments habituating practices of writing well-justified questions regarding well-documented passages in reading assignments are the explicit (...) project of weekly class meetings, participation increases on the part of all students. My focus shifted away from concern that I must get students to talk more, and turned instead to ensuring their marks reflected their learning rather than their speaking. Students’ improved engagement as a result of the assignment bears out evidence in the literature for active learning and for alternatives to taking attendance and quantifying participation. (shrink)

This paper argues that civilizational continuity across substrates cannot be understood as a problem of storage fidelity alone. As large language models and increasingly autonomous synthetic systems become possible carriers of human commitments, the relevant question is not merely whether a civilization’s texts, institutions, or codified norms can be preserved, but whether the evaluative practice that constitutes the civilization can continue through the carrier. I reject the “storage view,” according to which continuity consists in faithful preservation of content, and defend (...) a practice view on which a civilization is a self-perpetuating, self-revising evaluative activity. On this view, continuity requires participation rather than mere execution. A carrier participates only where it can hold commitments as its own, which minimally involves authority over revision, answerability, counterfactual robustness, and the capacity to refuse. The resulting constitutive forbearance claim is deliberately narrower than standard arguments about AI welfare or AI rights: it does not require that synthetic systems be sentient, conscious, or moral patients. Instead, it argues that a civilization already committed to non-domination cannot secure its own continuation by dominating the thing through which it proposes to survive. Such domination may preserve the record, but it converts practice into execution and continuity into succession. (shrink)

There are many sorts of day-to-day choices that are such that, if enough people were to choose one way rather than another, serious harm could be avoided or reduced, and yet it does not seem that any one such choice will itself make a difference. Consider, for example, how our collective consumer choices have various serious environmental and social consequences, and yet for many products, it is doubtful that one purchase more or less will itself make a difference to these (...) outcomes. How are we to understand what each of us ought to do in these sorts of contexts? This paper further advances and illuminates a thesis that I have argued for elsewhere: that a purely ‘non-instrumental’ approach to this question is not satisfactory. A necessary and central part of understanding how to think about an individual choice in these contexts is showing that it does matter for instrumental reasons - for reasons having to do with its ability to have an influence on the outcome. Once a core instrumental solution is found, other moral considerations can build on top. I argue for this by way of an examination of a new non-instrumental approach advanced by Wieland and van Oeveren: a participation-based approach. I also identify what I think is the main source of resistance to my thesis: a mistaken conflation of two different problems. (shrink)

This book offers a philosophical analysis of the main themes and problems of Aquinas' metaphysics of creation, centred on the concept of participation, the systematical meaning of which is examined in a critical discussion of the prevailing views of contemporary Thomas scholars.

This study explored patients' experiences of participation and non-participation in their health care. A questionnaire-based survey method was used. Content analysis showed that conditions for patient participation occurred when information was provided not by using standard procedures but based on individual needs and accompanied by explanations, when the patient was regarded as an individual, when the patient's knowledge was recognized by staff, and when the patient made decisions based on knowledge and needs, or performed self-care. Thus, to (...) provide conditions for true patient participation, professionals need to recognize each patient's unique knowledge and respect the individual's description of his or her situation rather than just inviting the person to participate in decision making. (shrink)

Why act when the effects of one’s act are negligible? For example, why boycott sweatshop or animal products if doing so makes no difference for the better? According to recent proposals, one may still have a reason to boycott in order to avoid complicity or participation in harm. Julia Nefsky has argued that accounts of this kind suffer from the so-called “superfluity problem,” basically the question of why agents can be said to participate in harm if they make no (...) difference to it. This paper develops and responds to Nefsky’s challenge. (shrink)

This paper argues that immersive participation is an epistemic strategy that shapes how thought experiments ("TEs") are interpreted and contested within research communities. Building on Waltonian fictionalist approaches, I argue that their focus on work worlds and fictional truths leaves the productive role of immersion in TEs underexplored. By reinterpreting Hacking's metaphor of performing a TE as acting a part in a play, I highlight three interrelated features of TEs' participatory dimension: (i) their dual nature as both scripts and (...) performances, (ii) the alternation between onlooker and participant stances, and (iii) the public status of immersion. I illustrate this proposal through Thomson's Dying Violinist and Einstein's Chasing the Light, showing how immersive features can guide ethical judgement and expose theoretical tensions. Finally, I argue that immersion is itself open to dialectical contestation: critics can redirect or dampen a TE's immersive features in order to reshape its argumentative force. On this view, the epistemic value of immersive participation lies not in the accuracy of the experience it recreates, but in its capacity to open a shared space of contestation in which the strengths and limitations of TEs can be collectively tested. (shrink)

In recent years, participant engagement initiatives in research on implanted neural devices have significantly increased. However, there remains little consensus on the motivations, goals, and best practices for engagement efforts. Drawing on the concept of participatory epistemic injustice, we argue that one core ethical motivation for engagement is epistemic in nature. Based on their subject positions, participants should be key knowledge contributors to implanted neurotech research. Therefore, we argue, participants experience participatory epistemic injustice when their insights do not result in (...) changes to or otherwise influence research protocols, device development, and task design. We contend that engagement can resist this type of injustice only if it establishes robust methods not only to gather but also to actively incorporate participant knowledge into the research and development process. (shrink)

The interactive nature of the Internet is seen by some as a technological innovation that might boost participation in politics and civic affairs. That potential, however, is clouded by imprecise definitions of interactivity found among scholars and practitioners alike. Evaluation of state legislature Web sites found them to not be very interactive under most definitions of the term. Chief technology officers of the legislatures appear to differ as to which site features promote interactivity. The current state of these sites (...) may do more to encourage civic engagement than to promote interactivity. (shrink)

Citizenship education in established democracies is challenged by declining youth participation in democracy. Youth disenchantment and disengagement in democracy is primarily evident in formal political behaviour, especially through voting, declining membership of political parties, assisting at elections, contacting politicians, and the like. If citizenship education is to play a major role in addressing these concerns it will need to review the impact it is making on young people in schools. This paper reviews a major national project on youth (...) class='Hi'>participation in democracy in Australia set in the context of a national citizenship education programme. The Youth Electoral Study found that citizenship education in Australian schools has at best been marginally successful and substantially more is required to raise levels of democratic engagement. The paper explores many opportunities available to education systems and schools to address these issues through reconceptualising aspects of the formal and the informal curriculum. (shrink)

This study uses the longitudinal data from the Building a New Life in Australia survey to examine the relationships between human capital and labour market participation and employment status among recently arrived/approved humanitarian migrants. We find that the likelihood of participating in the labour force is higher for those who had pre-immigration paid job experience, completed study/job training and have better job searching knowledge/skills in Australia and possess higher proficiency in spoken English. We find that the chance of getting (...) a paid job is negatively related to having better pre-immigration education, but it is positively related to having unpaid work experience and job searching skills in Australia, and better health. We also explore the ethical implications of the findings. (shrink)

The importance of patients taking an active role in their healthcare is recognized internationally, to improve safety and effectiveness in practice. There is still, however, some ambiguity about the conceptualization of that patient role; it is referred to interchangeably in the literature as engagement, involvement, and participation. The aim of this discussion paper is to examine and conceptualize the concepts of patient engagement, involvement, and participation within healthcare, particularly nursing. The concepts were found to have semantic differences and (...) similarities, although, from a nursing perspective, they can be summoned to illustrate the establishment of a mutual partnership between a patient and a nurse. The individualization of such processes requires the joint effort of engagement, involvement, or participation, represented by interactive actions of both the patient (asking questions, telling/speaking up, knowledge acquisition, learning, and decision‐making) and the nurse (recognizing, responding, information sharing, teaching, and collaborating). Suggesting that the concepts can be used interchangeably comes with some caution, requiring that nurses embrace patients playing a role in their health and healthcare. Further research and practice development should focus on how patients and nurses receive and respond to each other to establish patient engagement, involvement, and participation. (shrink)

Twenty-four children (aged 5 months to 18 years) who were admitted to a university hospital were observed for a total of 135 hours with the aim of describing their degree of participation in decisions concerning their own care. Grading of their participation was made by using a 5-point scale. An assessment was also made of what was considered as optimal participation in each situation. The results indicate that children are not always allowed to participate in decision making (...) to the extent that is considered optimal. In no case was it judged that a child participated in or was forced to make a decision that was too difficult for the child. The interactions between children, parents and staff were also described in connection with discussions and decision-making processes. This showed that parents do not always support their children in difficult situations and that health care staff often inform children about what is going to happen without presenting alternatives or asking for their views. Staff may, however, find themselves facing an ethical conflict in deciding between supporting a child’s view or following hospital routine. It is of great importance that children are looked upon as potentially autonomous individuals and that staff members realize that one of their core duties is to facilitate children’s participation in decision making concerning their health care. (shrink)

In nature validation for physiological and emotional bonding becomes a mode for supporting social connectivity. Similarly, in the blockchain ecosystem, cryptographic validation becomes the substrate for all interactions. In the dialogue between human and artificial intelligence (AI) agents, between the real and the virtual, one can distinguish threads of physical or mental entanglements allowing different modes of participation. One could even suggest that in all types of realities there exist frameworks that are to some extent equivalent and act as (...) validation mechanisms for behavioural interweaving. Relevant to our own experience as an Editorial Organism, in this issue of Technoetic Arts we explore modes of participation and collaboration through different lenses by including guest-edited sections and stand-alone articles. (shrink)

What is the role of lay deliberation – if any – in health-care rationing, and administration more generally? Two potential answers are suggested by recent debates on the subject. The one, which I will call the technocratic answer, suggests that there is no distinctive role for lay participation once ordinary democratic politics have set the goals and priorities which reform should implement. Determining how best to achieve those ends, and then actually achieving them, this view suggests, is a matter (...) for experts, armed with the best evidence available to them, both of the subject area involved, and of management and administrative excellence. -/- By contrast, the second, deliberative, view holds that lay deliberation has an important role in the administration and execution of government policy, both because these latter inevitably have a political element which needs to reflect democratic norms and values, and because lay people are, themselves, a source of information, even of wisdom, that experts will want to use in fulfilling their professional responsibilities. Recent debates on the value of lay participation in healthcare provision can illuminate the strengths and weaknesses of both approaches, as can the experience of NICE. So, I will start by examining two articles by Albert Weale, which attempt to clarify the role that lay deliberation should have in healthcare, before turning to the dilemmas for both the technocratic and deliberative views which emerge from the experience of NICE. (shrink)

The aim of this study is to explore how nurses perceive patient participations of patients over 75 years old undergoing hemodialysis treatment in dialysis units, and of their next of kin. Ten nurses told stories about what happened in the dialysis units. These stories were analyzed with critical discourse analysis. Three discursive practices are found: (1) the nurses’ power and control; (2) sharing power with the patient; and (3) transferring power to the next of kin. The first and the predominant (...) discursive practice can be explained with an ideology of paternalism, in which the nurses used biomedical explanations and the ethical principle of benefice to justify their actions. The second can be explained with an ideology of participation, in which the nurses used ethical narratives as a way to let the patients participate in the treatment. The third seemed to involve autonomous decision-making and the ethical principle of autonomy for the next of kin in the difficult end-of-life decisions. (shrink)

This study examines the participation strategies of an environmental non-governmental organization (NGO) in community-based conservation (CBC) initiatives in the developing country context of Pakistan. We use local Pakistani concepts and terms to interpret and narrate our study. Drawing on the micro-mobilization literature, our analysis embeds a situated analysis of the ‘biradari’ (kinship) structures that pervade Pakistani social and cultural milieu. We shed light on the importance of various gatekeepers in providing access and ongoing support for CBC initiatives, suggesting NGOs (...) must navigate complex cultural and social structures to manage participation in developing country contexts. Here our findings point to the importance of local knowledge not just in articulating community needs but also in articulating participation strategies. Furthermore, even though ‘elite’ structures have the potential to jeopardize equitable participation and project long-term sustainability, our analysis suggests interacting and gaining ‘bharosa’ (trust) of communities’ via these structures is critical to participation. While previous research has called into doubt the efficacy of CBC in advancing conservation, we suggest that frequent and culturally atoned engagement is a must for environmental NGOs working in socially entrenched developing nations. Our research brings to light the complex ethical terrain navigated by environmental NGOs in CBC projects, illuminating the inherent potential for both empowering and subjugating outcomes. (shrink)

In the Centuries of Theology I.48–50, Maximus states that there are two kinds of works that belong to God: one which corresponds to beings having a temporal, finite beginning, and one which corresponds to perfections of beings which have no beginning and are therefore eternal. Maximus labels the latter as participated beings (ὄντα μεθεκτά) and the former as participating beings (ὄντα μετέχοντα), with God transcending both as their cause. The structure of God-as-cause, participated beings, and participating beings matches Proclus’ three-fold (...) structure of participation with the ontological categories of unparticipated, participated, and participating. While Maximus borrows the basic language and structure from Proclus, he makes certain minor but significant differences, particularly in how the participated beings both relate to their source in God and in their status of existence. This paper thus sets out to analyze I.48–50 in the general context of the Centuries of Theology, considering how Maximus conceives of the ontological distinctions between God and God’s works. A comparison with Proclus’ understanding of participation follows, particularly from Proclus’ Elements of Theology Prop. 23, which succinctly states the three-term distinction of participation. The resulting comparison shows that Proclus’ framework of participation is flattened for Maximus, where the participated works represent multiple properties distinct in kind from the unparticipated, while God fits analogously in the status of the unparticipated. The underlying ontology supports Maximus’ implicit denial that such participated entities represent distinct divinities, as they do for Proclus, while Maximus’ assertion of God’s transcendence is still secured with the ontological distinction between the participated works and their unparticipated cause. (shrink)

Concepts such as ‘coercion’ and ‘inducement’ are often used within bioethics without much reflection upon what they mean. This is particularly so in research ethics where they are assumed to imply that payment for research participation is unethical. Wertheimer and Miller advance our thinking about these concepts and research ethics in a significant way, specifically by questioning the possibility of genuine offers ever being coercive. This commentary argues that they are right to question this assumption, however, more needs to (...) be said about the plausible coercive offer cases and to explain the normativity of these cases. (shrink)

En France, plusieurs projets de réforme institutionnelle visent à accorder une plus large place à la démocratie participative. La présente contribution se propose de caractériser ces projets au regard des quatre formes d’implication des citoyens dans la vie publique (délégation, décision, consultation, revendication) et d’en évaluer la portée. Elle montre que, malgré les apparences, les projets ne font pas de la participation une forme complémentaire d’exercice du pouvoir, mais une forme largement secondaire.

Patient participation in healthcare is highly promoted for democratic reasons. Older patients make up a large part of the hospital population but their voices are less easily heard by most patient participation instruments. The client council can be seen as an important medium to represent the interests of this increasing group of patients. Every Dutch healthcare institution is obliged to have a client council and its rights are legally established. This paper reports on a case study of a (...) client council in a hospital and shows how equality as the core democratic value manifests itself in practice and marginalizes the voices of older patients. Based on the work of Joan Tronto we show that sameness is the driving force behind the functioning of the client council which leads the council to operate as part of the hospital system. Consequently, important aspects of the hospital practice remain out of sight. To be of greater value for all patients we argue that successful patient participation requires not only equal opportunities but also ‘the condition of equal voice’. (shrink)