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)

To ensure that the information resulting from research is relevant to patients, the Patient‐Centered Outcomes Research Institute eschews the “traditional health research” paradigm, in which investigators drive all aspects of research, in favor of one in which patients assume the role of research partner. If we accept the premise that patient engagement can offer fresh perspectives that shape research in valuable ways, then at least two important sets of questions present themselves. First, how are patients being engaged—and (...) how should they be engaged? Second, which patients are being engaged—and which patients should be? This set has received relatively less attention, and the neglect is surprising, given that the “who” question is conceptually prior to the question of “how.”This article focuses attention on the “who” of patient engagement in research. First, we provide background on the rationale for patient engagement, underscoring the importance of ensuring the representativeness of engaged patients. Second, we present what little is known about patients engaged in PCORI‐funded research. Third, we identify and discuss the ethical implications of ways in which current practices of patient identification and recruitment may lead to a lack of representativeness. These practices include reliance on the well‐connected and well‐informed, reliance on patients who are not well trained or well‐informed, and reliance on patient advocacy organizations. Finally, we consider several strategies for addressing these pitfalls in order to maximize the positive goals of patient engagement. Patient engagement is intended to address the inability of researchers, funders, and others to fully represent patient views and priorities, but without sufficient attention, the patients selected for this role may still leave important gaps. (shrink)

:Influenced by the people-centered integrated care model, Healthy China 2030 was drafted recently with a special concern given to patient engagement. Although there are three levels of engagement, patients are more likely to be empowered and activated through an individualistic approach. Thus, engaging patients at the household level appear to have been overlooked so far. Supported by ethical values and practical evidence, this article attempts to address the importance of engaging patients at the household level in shaping (...) the Chinese healthcare system with the PCIC model orientation, and thus recommends four strategies for empowering and activating patients at the household level in the Chinese context. (shrink)

Engaging patients in research conduct and agenda setting is increasingly considered as an ethical imperative, and a way to transcend views of patients as passive subjects by fostering their empowerment. However, patient engagement in research is still an emerging approach with debated definitional and operational frameworks. This song addresses the sometimes difficult encounter and elusive mutual understanding between researchers and patients. “What is PER?” is an impressionistic illustration of the challenges and issues that can be found in the (...) universe of patient engagement in research. (shrink)

Engaging patients in research conduct and agenda setting is increasingly considered as an ethical imperative, and a way to transcend views of patients as passive subjects by fostering their empowerment. However, patient engagement in research is still an emerging approach with debated definitional and operational frameworks. This song addresses the sometimes difficult encounter and elusive mutual understanding between researchers and patients. “What is PER?” is an impressionistic illustration of the challenges and issues that can be found in the (...) universe of patient engagement in research. (shrink)

Engaging patients in research has come to be viewed as a vital component of high‐quality research, and funders now regard engaging patients and other stakeholders as a core criterion for funding decisions. In response, numerous empirical and conceptual papers have emerged to guide the process of engagement. However, as Emily Largent and colleagues rightly note, the inquiry of whom to engage has received less attention. While several teams have suggested that the selection of patients for engagement is an (...) important consideration, researchers generally have little guidance on how to undertake this process. To that end, Largent and colleagues offer an important contribution to the literature. I agree with their argument regarding the centrality of critically examining which patients to engage in research and with their recommendations to maximize the positive goals of patient engagement. However, three issues warrant further consideration. (shrink)

In a rigorous systematic review, Dukhanin and colleagues categorize metrics and evaluative tools of the engagement of patient, public, consumer, and community in decision-making in healthcare institutions and systems. The review itself is ably done and the categorizations lead to a useful understanding of the necessary elements of engagement, and a suite of measures relevant to implementing engagement in systems. Nevertheless, the question remains whether the engagement of patient representatives in institutional or systemic deliberations (...) will lead to improved clinical outcomes or increased engagement of individual patients themselves in care. Attention to the conceptual foundations of patient engagement would help make this systematic review relevant to the clinical care of patients. (shrink)

Increasing attention and efforts are being put towards engaging patients in health research, and some have even argued that patient engagement in research is an ethical imperative. Yet there is relatively little empirical data on ethical issues associated with PER. A three-round Delphi survey was conducted with a panel of early-career researchers involved in PER. One of the objectives was to examine the ethical dimensions of PER as well as ECRs’ self-perceived level of preparedness to conduct PER ethically. (...) The study was conducted among awardees of the Québec SPOR-SUPPORT Unit in Canada, who represent the next generation of researchers involved in PER. Many themes were addressed throughout the study, such as definition, values, patients’ roles, expected characteristics of patients, and anticipated challenges. Open-ended questions were used, and all quantitative data were collected through statements using 7-point Likert scales. Between April and November 2016, 25 ECRs were invited to participate; 18 completed both the first and second rounds, and 16 completed the third round. Panelists consisted of nine women and seven men with various backgrounds. The majority were between 25 and 44 years old. Panelists’ responses showed PER raises important ethical issues: 1) professionalization of patients involved in research ; 2) adequate remuneration of patients; 3) fair recognition of patients’ experiential knowledge; and 4) tokenism. While the panelists felt moderately prepared to confront these ethical issues, they reported being uncomfortable applying for an ethics certificate for a PER project. If PER is an ethical imperative, it is vital to establish clear ethical standards and to train and support the PER community to identify and resolve ethical issues. Despite their overall readiness to conduct PER, panelists did not feel adequately prepared to address many of these issues. It is not easy for ECRs to reconcile ethical desiderata and logistical imperatives. Additional research should focus on supporting the responsible conduct of PER, which, if not done, can undermine the credibility and feasibility of the entire PER enterprise. (shrink)

Pushing back on policies favored by dying patients is a challenging endeavor, requiring tact, engagement, openness to bidirectional learning, and willingness to offer alternative solutions. It's easy to make missteps, especially in the age of social media. Holly Fernandez Lynch shares her experience learning with and from the amyotrophic lateral sclerosis (ALS) community, first as a caricature of an ivory tower bioethicist and more recently as a trusted advisor, at least for some. Patient‐engaged bioethics doesn't mean taking the (...) view that patients are always right, but even when disagreement continues, progress is possible if academics and patients recognize the unique expertise each has to offer. (shrink)

Patient engagement in healthcare is increasingly discussed in the literature, and initiatives engaging patients in quality improvement activities, organizational design, governance, and research are becoming more and more common and have even become mandatory for certain health institutions. Here we discuss a number of ethical challenges raised by this engagement from patients from the perspectives of research, organizational/quality improvement practices, and patient experiences, while offering preliminary recommendations as to how to address them. We identified three broad (...) categories of ethical issues that intersect between the different types of patient engagement: (1) establishing a shared vision about goals of patient engagement and respective roles; (2) the process and method of engaging with patients; and (3) practical aspects of patient engagement. To explain these issues, we build from our personal, professional, and academic experiences, as well as traditions such as pragmatism and hermeneutics that stress the importance of participation, empowerment, and engagement. Patient engagement can be highly valuable at numerous levels, but particular attention should be paid to the process of engaging with patients and related ethical issues. Some lessons from the literature on the ethics of participatory research can be translated to organizational and quality improvement practices. (shrink)

Research Ethics, Volume 18, Issue 2, Page 126-131, April 2022. Engaging citizens and patients in research has become a truism in many fields of health research. It is now seen as a laudable—if not compulsory—activity in research for yielding more impactful and meaningful citizen/patient outcomes and steering research in the right direction. Although this research approach is increasingly common and commendable, we recently encountered a major obstacle in obtaining an ethics certificate from an institutional review board to conduct a (...) study that places citizen/patient perspectives on equal footing with those of academic/policy experts. The obstacle was the interpretation of fairness in terms of compensation for research participation. In terms of research ethics, this raised an important question: Should all types of participants be compensated equally, or should exceptions be made for citizen/patient participants? We argue that there are good reasons for exceptionalism and that clearer guidance on citizen/patient engagement in research should be embedded into research ethics doctrine. (shrink)

Engaging citizens and patients in research has become a truism in many fields of health research. It is now seen as a laudable—if not compulsory—activity in research for yielding more impactful and meaningful citizen/patient outcomes and steering research in the right direction. Although this research approach is increasingly common and commendable, we recently encountered a major obstacle in obtaining an ethics certificate from an institutional review board to conduct a study that places citizen/patient perspectives on equal footing with (...) those of academic/policy experts. The obstacle was the interpretation of fairness in terms of compensation for research participation. In terms of research ethics, this raised an important question: Should all types of participants be compensated equally, or should exceptions be made for citizen/patient participants? We argue that there are good reasons for exceptionalism and that clearer guidance on citizen/patient engagement in research should be embedded into research ethics doctrine. (shrink)

Volume 19, Issue 10, October 2019, Page 105-107.

The integrity of the patient–physician relationship depends on maintaining professional boundaries. While ethicists and professional organisations have devoted significant consideration to the subject of sexual boundary transgressions, the subject of non-sexual boundaries, especially outside the mental health setting, has been largely neglected. While professional organisations may offer guidance on specific subjects, such as accepting gifts or treating relatives, as well as general guidance on transparency and conflict of interest, what is missing is a principle-based method that providers can use (...) to assess non-sexual interactions with patients that transcend norms of practice. This paper attempts to offer an operational model for such assessment that considers not only the traditional emphasis on beneficence, but also incorporates concerns over entanglement and concordance. (shrink)

This article illustrates how a collaborative research process can successfully engage an underserved minority community to address health disparities. Pacific Islanders, including the Marshallese, are one of the fastest growing US populations. They face significant health disparities, including extremely high rates of type 2 diabetes. This article describes the engagement process of designing patient‐centered outcomes research with Marshallese stakeholders, highlighting the specific influences of their input on a randomized control trial to address diabetes. Over 18 months, an interdisciplinary (...) research team used community‐based participatory principles to conduct patient‐engaged outcomes research that involved 31 stakeholders in all aspects of research design, from defining the research question to making decisions about budgets and staffing. This required academic researcher flexibility, but yielded a design linking scientific methodology with community wisdom. (shrink)

This paper describes a pilot study of a new model for narrative medicine training, “community-based participatory narrative medicine”, which centers on shared narrative work between healthcare trainees and patients. Nine medical students and eight patients participated in one of two, five-week-long pilot workshop series. A case study of participants’ experiences of the workshop series identified three major themes: the reciprocal and collaborative nature of participants’ relationships; the interplay between self-reflection and receiving feedback from others; and the clinical and pedagogical implications (...) of the CBPNM model. Principles and proposed outcomes of the CBPNM model are presented. (shrink)

The current international healthcare focus on ensuring the perspectives and needs of individual persons, families or communities are met has led to the core tenet of person‐centred care for all. The nurse–patient relationship is central to the provision of care, and enhancing this relationship to ensure trust and respect supports optimal care outcomes for those accessing healthcare services. Engaging authentically is one of the recognised key approaches in person‐centred practice, and this scoping review of the literature aims to gain (...) an understanding of the role this process plays in developing effective relationships between nurses and the people they care for. A systematic search of databases and grey literature was undertaken, and twenty‐one research papers met the inclusion criteria. A thematic analysis revealed four themes: ‘getting to know the patient as a person’, ‘the complexity of relationship building—it takes time’, ‘the nurse: characteristics and behaviours that support the nurse–patient relationship’ and ‘the patient voice’. Nurses and patients both benefit from effective relationships, feeling valued and experiencing greater satisfaction with care. Key elements of engaging authentically were revealed as a nurse–patient relational process through this literature review; however, further research is needed to gain a greater understanding of this concept. (shrink)

Cultural values influence how people understand illness and dying, and impact their responses to diagnosis and treatment, yet end-of-life care is rooted in white, middle class values. Faith, hope, and belief in God’s healing power are central to most African Americans, yet life-preserving care is considered “aggressive” by the healthcare system, and families are pressured to cease it.

This article discusses the notion of emergent concerned groups and explores how these groups contribute to shaping the relations between technoscience, politics, and economic markets. The first part presents the case of the French Association of patients suffering from muscular dystrophies. This history suggests that under certain conditions, emergent concerned groups are able to impose a new form of articulation between scientific research and political identities by directly linking the issues of research content and results to that of their place (...) in the collective. The second part argues that the evolution of economic markets, combined with that of science and technology, leads to a multiplication of those emergent concerned groups. The study of the conditions under which these emergent groups become legitimate stakeholders as well as the analysis of their impact on market organization and technoscientific institutions are key research topics for the near future. (shrink)

Volume 20, Issue 6, June 2020, Page 82-84.

The literature on patient public involvement and engagement (PPIE) in health research has grown significantly in the last decade, with a diverse range of definitions and topologies promulgated. This has led to disputes over what the central functions and purpose of PPIE in health research is, and this in turn makes it difficult to assess and evaluate PPIE in practice. This paper argues that the most important function of PPIE is the attempt to make health research more democratic. (...) Bringing this function to the fore and locating PPIE in the wider context of changes in contemporary forms of democratic engagement provides greater conceptual clarity over what PPIE in research should be trying to achieve. Conceptualizing PPIE as a form of democratization has a number of benefits. First, theories of what are appropriate, normatively justifiable and workable criteria for PPIE practices can be developed, and this can provide tools to address the legitimacy and accountability questions that have troubled the PPIE community. Second, this work can be used to form the basis of a research agenda to investigate how PPIE in health research operates, and how it can facilitate and/or improve democratic processes in health research. (shrink)

As in other countries, the traditional doctor-patient relationship in the Japanese healthcare system has often been characterised as being of a paternalistic nature. However, in recent years there has been a gradual shift towards a more participatory-patient model in Japan. With advances in technology, the possibility to use digital technologies to improve patient interactions is growing and is in line with changing attitudes in the medical profession and society within Japan and elsewhere. The implementation of an online (...) patient engagement platform is being considered by the Myotonic Dystrophy Registry of Japan. The aim of this exploratory study was to understand patients’ views and attitudes to using digital tools in patient registries and engagement with medical research in Japan, prior to implementation of the digital platform. We conducted an exploratory, cross-sectional, self-completed questionnaire with a sample of myotonic dystrophy patients attending an Open Day at Osaka University, Japan. Patients were eligible for inclusion if they were 18 years or older, and were diagnosed with MD. A total of 68 patients and family members attended the Open Day and were invited to participate in the survey. Of those, 59 % submitted a completed questionnaire. The survey showed that the majority of patients felt that they were not receiving the information they wanted from their clinicians, which included recent medical research findings and opportunities to participate in clinical trials, and 88 % of patients indicated they would be willing to engage with digital technologies to receive relevant medical information. Patients also expressed an interest in having control over when and how they received this information, as well as being informed of how their data is used and shared with other researchers. Overall, the findings from this study suggest that there is scope to develop a digital platform to engage with patients so that they can receive information about medical care and research opportunities. While this study group is a small, self-selecting population, who suffer from a particular condition, the results suggest that there are interested populations within Japan that would appreciate enhanced communication and interaction with healthcare teams. (shrink)

We argue that while digital health technologies (e.g. artificial intelligence, smartphones, and virtual reality) present significant opportunities for improving the delivery of healthcare, key concepts that are used to evaluate and understand their impact can obscure significant ethical issues related to patient engagement and experience. Specifically, we focus on the concept of empowerment and ask whether it is adequate for addressing some significant ethical concerns that relate to digital health technologies for mental healthcare. We frame these concerns using (...) five key ethical principles for AI ethics (i.e. autonomy, beneficence, non-maleficence, justice, and explicability), which have their roots in the bioethical literature, in order to critically evaluate the role that digital health technologies will have in the future of digital healthcare. (shrink)

We will argue here that after more than 30 years of talk, theory, and clinical practice, we bioethicists still know far too little about what patients, subjects, and healthcare professionals are up to, morally. Bioethics is still near the beginning in grasping what it means to understand, much less to honor fully, the moral power and perspicacity of those bioethics is designed to serve. This is, of course, a serious charge, but one we will endeavor to show has merit. However, (...) we want to be clear from the start that we do not gainsay the important work that has been done in and through the influence of bioethics, both as a field of practical engagement and as a cultural movement, in improving how healthcare is delivered and how human subjects are treated. Thirty or 40 years—depending on how one marks the beginning point—is a very short time, and it is hard to imagine that wholesale changes, all of them in the right direction, could be the outcome for a field this young. Hence, we do not intend the title, “One Cheer for Bioethics,” as a wholesale indictment, but as an indication that there is a great deal of work yet to be done, and that following the currently dominant direction of the field is not likely to get us there. Our aim is to indicate just where future work should be focused, and to do so we will need to be critical of some of the preoccupations of the last three decades. a. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:From the Patient's Perspective:Engaging With the OtherGiovanni Stanghellini*, MD, DPhil Honoris Causa (bio)Homo homini salusOne century after the first conference gathering first-generation clinical phenomenologists in Zurich in 1922, today's psychiatry is far from exploring phenomena from the patient's perspective—that is, "letting-be" the Other, and "giving or compromising"—that is, engaging with the Other (Doerr-Zegers, 2022).The motto of phenomenology has been since its beginning "To things themselves!". Edmund Husserl—the (...) founder of phenomenology in the field of philosophy—exhorted to go back to the things themselves, that is, to render self-evident in fully fledged intuitions that what is usually given in preformed abstractions like "concepts," "judgments," "truths," and so on (Husserl, 1970).Clinical phenomenology has taken up Husserl's motto and added another: "To understand is to cure." Put together, the result is: "To cure is to understand the things themselves." But what does exactly mean "To the things themselves"? And what does it mean "to understand"? What is the use of understanding in the clinical setting? And, ultimately, what does the "cure" consist of?What Are the "Things Themselves" in PsychiatryIn the clinical setting, the "things themselves" (Stanghellini & Ikkos, in press) are the patients' own experiences, that is the patient's psychopathological world as experienced in the first person's perspective—what clinical phenomenology calls the "phenomena." Clinical phenomenology's very conception of the object of psychiatry, that is the patient's abnormal experiences lived in the first-person perspective and embedded in anomalous forms of consciousness and existential patterns, has been vastly oversimplified by current assessment procedures (Stanghellini, 2013). Today, there is a risk that clinical blinkering results in clinicians being only able to view the symptoms relevant to diagnosis and classification and excludes the scrutiny of the diverse and varied nature of what is really there in the patient's experience—the essential prerequisite to understanding his/her condition (Stanghellini & Broome, 2014). This oversimplification has been reinforced by reliance on techniques (e.g., an emphasis on behavioral symptoms and on reliability rather than validity) that are unable to capture the subtle distinctions [End Page 287] in experience that constitute the essentials of the "things themselves" in psychopathology, and to acknowledge that what the patient manifests is not a series of mutually independent, isolated symptoms, but rather certain meaning-structures of interwoven experiences, beliefs, and actions, all permeated by biographical details (Nordengaard & Parnas, 2013).The Problem of the Causes and Meanings of PhenomenaTo go to the "things themselves"—to "let them be"—we should acknowledge that to understand is neither to interpret nor to explain. It is not to interpret, i.e. to attribute a meaning, that is, to replace a manifest content, considered superficial and misleading, with a latent content, considered profound and authentic. Psychiatry as a branch of bio-medicine (as it is known) does not principally deal with meanings, but certainly not because it aims to the "things themselves." Psychiatry first and foremost deals with the causes of phenomena, that is, it tries to explain (scire per causas)—not to understand. The dream of psychiatry is to trace the causes of the symptoms to neutralize the symptoms in statu nascendi. Psychiatry is (would like to be) a science of the mechanisms leading to the formation of mental symptoms.Compared with the intentions of psychiatry, the intentions of psychological hermeneutics, which deals with revealing the meanings of phenomena, may seem a relief and progress, at least if seen from a "humanitarian" angle. The dream of psychology—or at least of certain psychology (such as that of psychoanalytic inspiration)—is to bring to light the authentic meaning of a symptom. Hermeneutic psychology, for example, a psychoanalytic one, is (would like to be) an archaeology of the symptom, unearthing its profound significance.I am not arguing against explanations and interpretations per se, rather underscoring the way these may stand in the way of engaging with the patient in a third mode of approaching clinical phenomena, that is understanding. Both psychiatry's attempts at explanation and hermeneutic psychology's attempts at interpretation may suffocate... (shrink)

Psychological trauma is ubiquitous, an often hidden yet influential factor in care across clinical specialties. Interdisciplinary health professions education is mobilizing to address the importance of trauma-sensitive care. Given their attention to complex human realities, the health humanities are well-poised to shape healthcare learners’ responses to trauma. Indeed, many such arts and humanities curricula propose narrative exercises to strengthen empathy, self-reflection, and sensitive communication. Trauma, however, is often unwordable, fragmentary, and physically encoded, incompatible with storying methods. This article presents a (...) recent innovation, the Art is Patient seminar series, which focuses on aesthetic exercises to help learners access and share non-verbal, embodied, and relational responses to art. Based in an art museum context, it provides successive experiences of approaching, witnessing, and engaging with visual art as an analogue to developing trauma-sensitive relationships. Reflections on the process locate the seminar vis-à-vis health humanities practices, aesthetics, and trauma-informed approaches. (shrink)

We will argue here that after more than 30 years of talk, theory, and clinical practice, we bioethicists still know far too little about what patients, subjects, and healthcare professionals are up to, morally. Bioethics is still near the beginning in grasping what it means to understand, much less to honor fully, the moral power and perspicacity of those bioethics is designed to serve. This is, of course, a serious charge, but one we will endeavor to show has merit. However, (...) we want to be clear from the start that we do not gainsay the important work that has been done in and through the influence of bioethics, both as a field of practical engagement and as a cultural movement, in improving how healthcare is delivered and how human subjects are treated. Thirty or 40 years—depending on how one marks the beginning point—is a very short time, and it is hard to imagine that wholesale changes, all of them in the right direction, could be the outcome for a field this young. Hence, we do not intend the title, “One Cheer for Bioethics,” as a wholesale indictment, but as an indication that there is a great deal of work yet to be done, and that following the currently dominant direction of the field is not likely to get us there. Our aim is to indicate just where future work should be focused, and to do so we will need to be critical of some of the preoccupations of the last three decades. a. (shrink)

Only somewhat recently has a specific literature emerged focused on the ethics of engaging patient and community stakeholders in health research. This literature is informed by a broad range of disciplinary frameworks and norms. It also overlaps with – and diverges from – traditional research ethics scholarship in interesting and important ways. This volume is an effort to bring together, in one place, important perspectives on the ethics of stakeholder engagement in health research. Here, ethics, patient and (...) community stakeholders, and health-related research are all conceptualized broadly. (shrink)

This book provides in-depth analyses of a wide range of topics surrounding ethical issues in community and patient stakeholder–engaged health research, and highlights where consensus exists, is emerging, or remains elusive. Topics in this book cover the history of stakeholder engagement in health research; how codes of ethics and regulations have (or have not) addressed stakeholder engagement; how to promote equitable collaboration; the ethical perspectives of different stakeholders; and the unique challenges posed by stakeholder- engaged research to (...) the protection of human research participants and the research ethics review process. The book includes discussion of unique issues that arise in stakeholder engagement relevant to different populations, settings, and research designs. This book is relevant for anyone with a role or interest in stakeholder-engaged research, including patient and community research partners; academic researchers; research ethics scholars and educators; and funders. (shrink)

Objective: This study examined whether patients who were randomly assigned to their preferred therapy arm had stronger engagement with their treatment than those who were randomly assigned to a non-preferred therapy arm.Method: Data were drawn from a RCT comparing Individual Meaning-Centered Psychotherapy, with Individual Supportive Psychotherapy, in patients with advanced cancer. Treatment engagement was operationalized as patients' perceptions of the therapeutic alliance with their therapist and therapy sessions attended. Two 2 by 2 Analysis of Variance models were used, (...) with treatment preference and treatment assignment as the independent variables and working alliance and number of sessions attended as outcome variables.Results: Patients who preferred and were assigned to IMCP reported a significantly stronger alliance than those who preferred IMCP but were assigned to ISP.Conclusions: The findings from this study have broader implications for research on psychotherapy beyond the appeal of IMCP in advanced cancer patients. Patients who prefer a novel psychotherapy that they cannot engage in elsewhere, but receive the standard treatment may experience weaker alliance than patients who prefer the standard but receive the novel therapy.Trial registration:Clinicaltrial.gov ID: NCT01323309. (shrink)

Discussions surrounding patient engagement and empowerment often use the terms “patient” and “consumer” interchangeably. But do the two terms hold the same meaning, or is a “patient” a passive actor in the health care arena and a “consumer” an informed, rational decision-maker? Has there been a shift in our usage of the two terms that aligns with the increasing commercialization of health care in the U.S. or has the patient/consumer dynamic always been a part of (...) the buying and selling of health care in the American system? Recent discussions of the issue exist in the popular press and in social media forums such as TEDMED, but few direct analyses of the ethical, legal, and policy ramifications of this possible shift in terminology are available in the academic literature. This paper analyzes our usage of the terms and any recent changes in the dynamic and discusses the ethical, legal, and policy implications of this simple terminology for the physicianpatient relationship. (shrink)

In this case report, we describe a woman with advancing dementia who still retained decisional capacity and was able to clearly articulate her request for deactivation of her implanted cardiac pacemaker—a scenario that would result in her death. In this case, the patient had the autonomy to make her decision, but clinicians at an outside hospital refused to deactivate her pacemaker even though they were in unanimous agreement that the patient had capacity to make this decision, citing personal (...) discomfort and a belief that her decision seemed out of proportion to her suffering. We evaluated her at our hospital, found her to have decision-making capacity, and deactivated her pacer resulting in her death about 9 days later. While some clinicians may be comfortable discussing patient preferences for device deactivation in patients who are imminently dying, we can find no reports in the literature of requests for device deactivation from patients with terminal diagnoses who are not imminently dying. (shrink)

Patient and public involvement (PPI) has gained widespread support in health research and health policy circles, but there is little consensus on the precise meaning or justifications of PPI. We argue that an important step towards clarifying the meaning and justification for PPI is to split apart the familiar acronym and draw a distinction between patient and public involvement. Specifically, we argue that patient involvement should refer to the practice of involving individuals in health research or policy (...) on the basis of their experience with a particular condition, while public involvement should refer to the practice of involving individuals in health policy or research based on their status as members of a relevant population. Analyzing cases from the UK, Australia, and the USA, we show how our proposed distinction can deliver much needed clarity to conversations on PPI, while guiding the development and evaluation of future PPI‐based policies. (shrink)

In contemporary bioethics, the autonomy of the patient has assumed considerable importance. Progressing from a more limited notion of informed consent, shared decision making calls upon patients to voice the desires and preferences of their authentic self, engaging in choice among alternatives as a way to exercise deeply held values. One influential opinion in Jewish bioethics holds that Jewish law, in contradistinction to secular bioethics, limits the patient's exercise of autonomy only in those instances in which treatment choices (...) are sensitive to preferences. Here, we analyze a discussion in the Mishna, a foundational text of rabbinic Judaism, regarding patient autonomy in the setting of religiously mandated fasting, and commentaries in the Babylonian and Palestinian Talmuds, finding both a more expansive notion of such autonomy and a potential metaphysical grounding for it in the importance of patient self-knowledge. (shrink)

Patient and citizen participation is now regarded as central to the promotion of sustainable health and health care. Involvement efforts create and encounter many diverse ethical challenges that have the potential to enhance or undermine their success. This article examines different expressions of patient and citizen participation and the support health ethics offers. It is contended that despite its prominence and the link between patient empowerment and autonomy, traditional bioethics is insufficient to guide participation efforts. In addition, (...) the turn to a “social paradigm” of ethics in examinations of biotechnologies and public health does not provide an account of values that is commensurable with the pervasive autonomy paradigm. This exacerbates rather than eases tensions for patients and citizens endeavoring to engage with health. Citizen and patient participation must have a significant influence on the way we do health ethics if its potential is to be fulfilled. (shrink)

The question of whether clinical ethics consultants may engage in patient advocacy in the course of consultation has not been addressed, but it highlights for the field that consultants? allegiances, and the boundaries of appropriate professional practice, must be better understood. I consider arguments for and against patient advocacy in clinical ethics consultation, which demonstrate that patient advocacy is permissible, but not central to the practice of consultation. I then offer four recommendations for consultants who engage in (...) patient advocacy, and consider the implications of this issue for the field.1. (shrink)

This article discusses findings from a mixed method literature review that investigated cancer patients’ perceptions of what constitutes a good nurse. To find pertinent articles, we conducted a systematic key word search of five journal databases (1998—2008). The application of carefully constructed inclusion criteria and critical appraisal identified 12 relevant articles. According to the patients, good nurses were shown to be characterized by specific, but inter-related, attitudes, skills and knowledge; they engage in person-to-person relationships, respect the uniqueness of patients, and (...) provide support. Professional and trained skills as well as broad and specific nursing and non-nursing knowledge are important. The analysis revealed that these characteristics nurtured patient well-being, which manifests as optimism, trust, hope, support, confirmation, safety and comfort. Cancer patients’ perceptions of what constitutes a good nurse represent an important source of knowledge that will enable the development of more comprehensive and practice-based views on good nursing care for such patients. These perceptions help us to understand how nurses effectively make a difference in cancer patient care. (shrink)