ObjectiveDropout rates are a prominent problem in youth psychotherapy. An important determinant of dropouts is the quality of the therapeutic relationship. This study aimed to evaluate the association between the therapeutic relationship and dropouts in an intensive mentalization-based treatment for adolescents with personality disorders.MethodsPatients included were either dropouts or completers of an intensive MBT. The therapeutic relationship was measured with the child version of the Session Rating Scale, which was completed by the patient after each group (...) therapy session. For each patient, the treatment termination status was indicated by the treatment staff. The reliable change index was calculated for the C-SRS to determine significant changes in the therapeutic relationship.ResultsWhile both groups started with similar scores on the C-SRS, the scores between dropouts and completers differed significantly at the end of the treatment period. On average, during therapy, an increase was seen in the scores of completers, and a decrease was seen in the scores of dropouts. While dropouts could not be predicted based on the C-SRS scores, a significant decrease in C-SRS scores during the last two sessions occurred more often for dropouts than for completers.ConclusionOur findings show that to prevent dropouts, the patient’s judgment of the quality of the therapeutic relationship should be monitored continuously, and decreases discussed with the patient and the group. (shrink)

A literature search was conducted on studies of new drugs used with patients with schizophrenia reported by U.S. and non-U.S. researchers from 1966–1993, yielding 41 U.S., and a total of 24 other non-U.S. studies, among them 11 British studies. Results of the U.S. and non-U.S. studies were pooled separately and compared. Among several comparable conditions discussed, the lack of any data on suicides in the U.S. studies was observed. For a second statistical analysis of suicide rates ‘person-years’ were calculated to (...) adjust for differing washout durations. The results obtained include findings that the percentage of patients relapsing in U.S. studies was slightly lower than in non-U.S. studies ; the percentage of patients dropping out in U.S. studies was higher than in non-U.S. studies ; known location of dropout patients in U.S. studies was 1.7%, compared to 2.6% in non-U.S. studies. The most interesting finding was that no suicides were reported in U.S. studies, compared to 0.6% of patients reported in British studies. Some U.S. studies used ‘challenge doses’, such as amphetamines or L-dopa; no non-U.S. studies reported their use. Compared to U.S. studies, those by non-U.S., and particularly British, researchers appeared to report adverse events in their studies. ‘Challenge’ drugs were not used; suicides were reported. It is estimated that the probability that no patients suicided who participated in the U.S. is small—one in 500. (shrink)

Background: The Parkinsonian [i.e., Parkinson's disease ] gait disorder represents a therapeutical challenge with residual symptoms despite the use of deep brain stimulation of the subthalamic nucleus and medical and rehabilitative strategies. The aim of this study was to assess the effect of different DBS modes as combined stimulation of the STN and substantia nigra and environmental rehabilitative factors as footwear on gait kinematics.Methods: This single-center, randomized, double-blind, crossover clinical trial assessed shod and unshod gait in patients with PD with (...) medication in different DBS conditions during different gait tasks and compared gait characteristics to healthy controls. Notably, 15 patients participated in the study, and 11 patients were analyzed after a dropout of four patients due to DBS-induced side effects.Results: Gait was modulated by both factors, namely, footwear and DBS mode, in patients with PD. Footwear impacted gait characteristics in patients with PD similarly to controls with longer step length, lower cadence, and shorter single-support time. Interestingly, DBS exerted specific effects depending on gait tasks with increased cognitive load. STN+SN DBS was the most efficient DBS mode compared to STIM OFF and STN DBS with intense effects as step length increment during dual task.Conclusion: The PD gait disorder is a multifactorial symptom, impacted by environmental factors as footwear and modulated by DBS. DBS effects on gait were specific depending on the gait task, with the most obvious effects with STN+SN DBS during gait with increased cognitive load. (shrink)

Obsessive–compulsive disorder is a debilitating mental health disorder that can easily become a treatment-resistant condition. Although effective therapies exist, only about half of the patients seem to benefit from them when we consider treatment refusal, dropout rates, and residual symptoms. Thus, providing effective augmentation to standard therapies could improve existing treatments. Group compassion-focused interventions have shown promise for reducing depression, anxiety, and avoidance related to various clinical problems, but this approach has never been evaluated for OCD individuals. However, cultivating compassion (...) for self and others seems crucial for OCD patients, given the accumulating research suggesting that fear of guilt, along with isolation and self-criticism, can strongly contribute to the development and maintenance of OCD. The primary aim of this pilot study was to evaluate the acceptability, tolerability, and effectiveness of an 8-week group compassion-focused intervention for reducing OCD symptoms, depression, fear of guilt and self-criticism, and increasing common humanity and compassionate self-reassuring skills in treatment-resistant OCD patients. Using a multiple baseline experimental design, the intervention was evaluated in a sample of OCD patients who had completed at least 6 months of CBT treatment for OCD, but who continued to suffer from significant symptoms. Participants were randomized to different baseline assessment lengths; they then received 8 weekly, 120-min group sessions of compassion-focused therapy for OCD, and then were tested again at post-treatment and at 1 month follow up. Despite the adverse external circumstances, by the end of treatment, all participants demonstrated reliable decreases in OCD symptoms, and these improvements were maintained at 4-week follow-up for seven of eight participants. The intervention was also associated with improvements in fear of guilt, self-criticism, and self-reassurance, but less consistent improvements in depression and common humanity. Participants reported high levels of acceptability of and satisfaction with the intervention. Results suggest that the intervention may be beneficial as either a stand-alone treatment or as an augmentation to other treatments. (shrink)

The impact of stress and other psychological variables on Inflammatory Bowel Disease prognosis, treatment response, and functional level is well-established; however, typical IBD treatment focuses on the physiological pathology of the disease and neglects complementary stress-reducing interventions. Recent pilot studies report the benefits of mindfulness-based interventions in people living with IBD, but are limited by small sample sizes. Recruitment challenges to in-person studies may be in part due to the difficulty IBD patients often have adhering to fixed schedules and travel (...) as a result of IBD symptoms such as pain, fatigue, and incontinence. The current study aimed to address this barrier by offering participants access to online mindfulness training, allowing individuals to engage with intervention materials to fit their own schedule. Online mindfulness programs have gained popularity in recent years, as they increase access and flexibility and decrease cost to the user; however, the dropout rate tends to be high. The current study compared the rate of adherence and efficacy of mindfulness training as a function of level of support: self-guided versus supported. Analysis revealed no significant difference in the benefits received between participants in the two groups; however, a significant difference group was found in terms of rate of completion, with 44.1% of the supportive group completing the protocol compared to 11.7% of the self-guided. Common challenges to meditation were measured, but did not significantly predict adherence to the intervention, and experience of these challenges did not significantly change over the duration of the study. Implications of the current research, future directions for the use of MBI for IBD patients, and a discussion of methodological considerations are provided. (shrink)

BackgroundThe aim of this study was to investigate the effectiveness of psychotherapeutic interventions for clinically referred adolescents, as well as to examine whether sociodemographic, clinical, or treatment-related variables and patients’ role expectations predict treatment outcome or are possible predictors of treatment dropout.MethodThe study comprised 58 adolescents suffering from diverse psychiatric disorders referred to psychotherapeutic interventions conducted in outpatient care. The outcome measures, The Beck Depression Inventory, and the Clinical Outcomes in Routine Evaluation – Outcome Measure were filled in at baseline (...) and at 3-, 6-, and 12-month follow-ups. Possible predictors were assessed at baseline.ResultsThe results indicate that the mean level of symptoms and psychological distress decreased during the treatment, most reduction occurring in the first 6 months. The frequency of treatment sessions was the strongest predictor of good outcome. Adolescents with a higher level of externalizing problems or lower level of expectations for their own active role in treatment seem to have a higher risk of dropping out.ConclusionOffering intensive treatment for a shorter period might be the most efficient way to gain symptom reduction and decrease psychological distress in psychotherapeutic interventions with adolescents. Being aware of externalizing behavior and increasing the adolescents’ own agency during the assessment could strengthen commitment and result in the adolescent benefiting more from treatment. (shrink)

When I was a 7 months pregnant medical student, an attending surgeon asked me to which specialty I would be applying. When I replied that I was hoping to match in general surgery, he touched my pregnant abdomen and said, “Not with that you’re not.” I am not alone. Gender bias and discrimination have been shown to negatively impact women surgeons throughout their careers and deter women from even applying in surgical fields.1 Bias against female surgical trainees leads to less (...) operative autonomy and higher dropout rates.2 3 Once faculty, women surgeons are less likely to reach leadership roles.4 Recent studies confirm the author’s assertion that implicit biases create substantial harm. The author has undertaken an important study, conducting in-depth interviews with 46 women surgeons in Australia that identifies four distinct types of bias causing cumulative harm. In all four types of biases: Workplace factors including leave policies and mentorship. Epistemic injustices, or unfair assessments of women surgeons’ credibility by patients and colleagues. Stereotyped expectations. Objectification, implicit biases were seen. While many of the broad factors impeding women in surgery are well known, the author argues that these subtler factors, including both implicit bias and epistemic injustice, have a large impact. The …. (shrink)

Only half of our nation's minority students graduate from high school along with their peers. For many groups—Latino, black, or Native American males—graduation rates are even lower. As states hasten to institute higher standards and high-stakes tests in the effort to raise student achievement, this situation is likely to worsen, particularly among minority students. Yet this educational and civil rights crisis remains largely hidden from public view. The dropout problem is far worse than statistics indicate. Many states and districts simply (...) do not count those students who fail to receive diplomas as dropouts. Even the hardest-hit urban districts report dropout rates of only 5-10 percent. In _Dropouts in America_, The Civil Rights Project reveals the scope of this hidden crisis, reviewing the most recent and accurate data on graduation and dropout rates, exploring the reasons that young people drop out of school, and presenting the most promising models for helping high school students graduate with their peers._ Dropouts in America_ is a call to action for educators, advocates, and policymakers alike, and an invaluable resource for those concerned with equal rights and the quality of American education. (shrink)

The dropout rate among Spanish university students is very high compared to the European mean, creating a pressing need for the introduction of policies and programmes aimed at increasing rates of persistence. In this article, we study this problem by combining students? perceived learning outcomes with their dropout intentions, and we propose a research model that considers subjective factors that might impact this decision. The model is estimated for two degree courses: Business Administration and Nursing. The estimation method uses structural (...) equations based on the partial least squares algorithm. This allows the construction of indices for the variables of interest, enabling us to make comparisons between courses and over time. To reduce dropout intentions, efforts need to be focused on obtaining better cognitive outcomes, as well as on achieving a higher level of student satisfaction with their university experience. (shrink)

Despite recurring efforts, a gap exists across a variety of contexts between the protection of patients' safety in theory and in practice. This timely Research Handbook highlights these critical issues and suggests both legal and policy changes are necessary to better protect patients' safety. Multidisciplinary in nature, this Research Handbook features contributions from eminent academics, policy makers and medical practitioners from the Global North and South, discussing the essential facets concerning patient safety and the law. It highlights how the (...) role of legislation and case law has the potential to influence, both positively and negatively, medical practice and the quality of care. Chapters explore patient safety and the global health agenda; physiotherapy; 'non-therapeutic' clinical research with children; patient safety awareness in healthcare education; and the increasing use of robotics and artificial intelligence in healthcare. Outlining a wide range of international perspectives on patient safety and the law, this Research Handbook will appeal to academics and researchers specialising in health and medical law, human rights and healthcare regulation. It will also serve as a valuable resource for legal and medical practitioners alike, as well as clinicians and professionals working in healthcare governance. (shrink)

Although respect and human presence are frequently reported in nursing literature, these are poorly defined within a nursing context. The aim of this study was to examine the differences, if any, in the perceived frequency of respect and human presence in the clinical care, between nurses and patients. A convenience sample of 1537 patients and 1148 nurses from six European countries (Cyprus, Czech Republic, Finland, Greece, Hungary and Italy) participated in this study during autumn 2009. The six-point Likert-type Caring Behaviours (...) Inventory-24 questionnaire was used for gathering appropriate data. The findings showed statistically significant differences of nurses’ and patients’ perception of frequency on respect and human presence. These findings provide a better understanding of caring behaviours that convey respect and assurance of human presence to persons behind the patients and may contribute to close gaps in knowledge regarding patients’ expectations. (shrink)

We design an experiment to study investment behavior in different repeated contest settings, varying the uncertainty of the outcomes and the number of participants in contests. We find decreasing over-expenditures and a higher rate of ‘dropout’ in contests with high uncertainty over outcomes, while we detect a quick convergence toward equilibrium predictions and a near to full participation when this type of uncertainty vanishes. These results are robust to changes in the number of contestants. A learning parameter estimation using the (...) experience-weighted attraction model suggests that subjects adopt different learning modes across different contest structures and helps to explain expenditure patterns deviating from theoretical predictions. (shrink)

Being a patient and living a life -- Clinical space and traits of healing -- False starts and frequent failures -- Three journeys : A.'Ibuprofen and love', B. 'Staying tuned up', C. 'We all want the same things' -- Being a patient : the moral field -- Rethinking healthcare ethics : the patient's moral authority.

Background:The concept of patient advocacy is still poorly understood and not clearly conceptualized. Therefore, there is a gap between the ideal of patient advocacy and the reality of practice. In order to increase nursing actions as a patient advocate, a comprehensive and clear definition of this concept is necessary.Research objective:This study aimed to offer a comprehensive and clear definition of patient advocacy.Research design:A total of 46 articles and 2 books published between 1850 and 2016 and related (...) to the concept of patient advocacy were selected from six databases and considered for concept analysis based on Rodgers’ evolutionary approach.Ethical considerations:This study was approved by the Research Ethics Committee of Tarbiat Modares University.Findings:The attributes of patient advocacy are safeguarding (track medical errors, and protecting patients from incompetency or misconduct of co-workers and other members of healthcare team), apprising (providing information about the patient’s diagnosis, treatment, and prognosis, suggesting alternatives of healthcare, and providing information about discharge program), valuing (maintaining self-control, enabling patients to make decisions freely, maintaining individualization and humanity, maintaining patient privacy, and acting in the patients’ values, culture, beliefs, and preferences), mediating (liaison between patients, families, and healthcare professionals, being patients’ voice, and communicate patient preferences and cultural values to members of the healthcare team), and championing social justice in the provision of healthcare (confronting inappropriate policies or rules in the healthcare system, identifying and correcting inequalities in delivery of health services, and facilitating access to community health services and health resources).Discussion and conclusion:The analysis of this concept can help to develop educational or managerial theories, design instruments for evaluating the performance of nurses in patient advocacy, develop strategies for enhancing patient advocacy, and improve the safety and quality of nursing care in the community and healthcare system. (shrink)

Patient centred diagnosis is best practised through shared decision making; an iterative dialogue between doctor and patient, whichrespects a patient’s needs, values, preferences, and circumstances. -/- Shared decision making for diagnostic situations differs fundamentally from that for treatment decisions. This has important implications when considering its practical application. -/- The nature of dialogue should be tailored to the specific diagnostic decision; scenarios with higher stakes or uncertainty usually require more detailed conversations.

The purpose of this study was to explore the challenges met by nursing staff in a rehabilitation ward. The overall design was qualitative: data were derived from focus interviews with groups of nurses and analyzed from a phenomenological-hermeneutic perspective. The main finding was that challenges emerge on two levels of ethics and rationality: an economic/administrative level and a level of care. An increase in work-load and the changing potential for patient rehabilitation influence the care that nurses can provide in (...) rehabilitating patients, and therefore also affect patients’ feelings of self-worth and dignity. Some patients wish to maintain their independence and autonomy, whereas others seem to ‘lose themselves’. Independence and autonomy are associated with dignity, but their lack is contrary to it. (shrink)

It is estimated that more than half of all online transactions are abandoned before completion. This paper investigates the psychological factors that influence online shopping behavior, with a view to improving transactional success rates. Through a critical review of the literature, we identify a range of factors which predict abandonment of online shopping, highlighting affective and motivational dimensions in addition to processing style and characteristics of the consumer, device, and product. We conclude that online purchasing and payment systems that boost (...) consumers’ motivation to buy and prevent or attenuate negative affective states will demonstrate the greatest rates of transactional success. However, with rapid advancement in technology, continued research is needed to fully understand the potential impact on future online purchasing behavior. (shrink)

Maintenance and promotion of patient dignity is an ethical responsibility of healthcare workers. The aim of this study was to investigate patient dignity and related factors in patients with heart failure. In this qualitative study, 22 patients with heart failure were chosen by purposive sampling and semi-structured interviews were conducted until data saturation. Factors related to patient dignity were divided into two main categories: patient/care index and resources. Intrapersonal features (inherent characteristics and individual beliefs) and interpersonal (...) interactions (communication, respect, enough information, privacy, and authority) were classified as components of the patient/care index category. Human resources (management and staff) and environmental resources (facilities and physical space) were classified as components of the resources category. The results will increase healthcare staff's understanding of patient dignity and its related factors, and provide information regarding the development of systems and processes that support patients in ways that are consistent with these values. (shrink)

Ethical foundations of patient safety -- Vigilance -- Mindfulness -- Compliance -- Humility -- Some theoretical aspects of vigilance and risk acceptability -- Fifty shades of error -- The standard care and medical malpractice law as an ethical achievement -- The present and the future.

Background:Since the adoption of the Universal Declaration of Human Rights by the United Nations in 1948, human rights as set out in government documents have gradually changed, with more and more power being transferred to individual.Objectives:The aim of this article is to analyze how the position of the patient in need of care is constructed in Norway’s renamed and revised Patients’ and Service Users’ Rights Act (originally Patients’ Rights Act, 1999) and published comments which accompanying this legislation from the (...) Norwegian Ministry of Health and Care Service.Research design:A constructivist design was used, and Fairclough’s critical discourse approach was adopted to analyze the text of the Patients’ and Service Users’ Rights Act and comments.Findings:The analysis identified three discourses: (a) political discourse, containing ethical discourses about priority and economy, in which patients are constructed as powerless individuals; (b) expert discourse, containing a theme about patients’ trust in the healthcare team and its knowledge, in which patients are constructed as helpless individuals lacking knowledge; and (c) patient participation and patient autonomy discourse, containing ethical discourses about decision-making, in which patients are constructed not only as individuals with needs and rights but also as “troublesome.”Conclusion:Dominant paternalistic discourses in the legal text validate the power of medicine, the healthcare system, and heath personnel over the needs, rights, participation, and autonomy of the patient. (shrink)

'The Patient as Victim and Vector' is jointly written by four authors at the University of Utah with expertise in bioethics health law, and both clinical practice and public health policy concerning infectious disease.

The aim of this study was to obtain in-depth knowledge about caring confirmation of patients with cancer, from the patients’ point of view. The research topic was: what is the significance for patients of their being confirmed by nursing personnel? Fifteen men and women between 43 and 80 years of age participated in this study. The method of data collection used was qualitative research interviewing. A hermeneutic approach was used to interpret the data, in which Kvale’s self-perception, the ‘common sense’ (...) level, and theoretical levels were applied. The results are summarized in three areas: an outer confirmation, an inner confirmation, and a lack of the latter. Outer confirmation meant being understood and taken seriously; the maintenance of human dignity and worth indicated inner confirmation. A lack of inner confirmation is primarily manifest in terms of patients’ mental, spiritual and existential concerns. In relation to the theory of Eriksson, these patients were confirmed at the level of having and being, but seldom at the level of becoming. (shrink)

It describes and explains the patient-centered model examining and evaluating qualitative and quantitative research. It comprehensively covers the evolution and the six interactive components of the patient-centered clinical method, taking the reader through the relationships between the patient and doctor and the patient and clinician. All the editors are professors in the Department of Family Medicine at the University of Western Ontario, London, Canada.

The art of interpretation has traditionally been an integral part of medical practice, but little attention has been devoted to its theory. Hermeneutics or the study of interpretation has grown as a methodological interest primarily within the humanities. Borrowing from the medieval fourfold sense of scripture, which organizes interpretive activity both logically and comprehensively, I propose a hermeneutical model of clinical decision-making. According to the model, a patient is analogous to a literary text which may be interpreted on four (...) levels: (1) the literal facts of the patient's body and the literal story told by the patient, (2) the diagnostic meaning of the literal data, (3) the praxis (prognosis and therapeutic decisions) emanating from the diagnosis, and (4) the change effected by the clinical encounter in both the patient's and clinician's life-worlds. The model is illustrated through application to a medical case. (shrink)

Patient preference predictors (PPPs) promise to provide medical professionals with a new solution to the problem of making treatment decisions on behalf of incapacitated patients. I show that the use of PPPs faces a version of a normative problem familiar from legal scholarship: the problem of naked statistical evidence. I sketch two sorts of possible reply, vindicating and debunking, and suggest that our reply to the problem in the one domain ought to mirror our reply in the other. The (...) conclusion is thus conditional: if we think the problem of naked statistical evidence is a serious problem in the legal domain, then we should be concerned about the symmetrical problem for PPPs. (shrink)

Phenomenology gives rise to certain ontological considerations that have far-reaching implications for standard conceptions of patient autonomy in medical ethics, and, as a result, the obligations of and to patients in clinical decision-making contexts. One such consideration is the phenomenological reduction in classical phenomenology, a core feature of which is the characterisation of our primary experiences as immediately and inherently meaningful. This paper builds on and extends the analyses of the phenomenological reduction in the works of Husserl, Heidegger, and (...) Merleau-Ponty in order to identify and explain its implications for our current understanding of the principle of respect for patient autonomy and the norms of clinical decision making. (shrink)

BackgroundThe principles of informed consent, confidentiality and privacy are often neglected during patient care in developing countries. We assessed the degree to which doctors in Lahore adhere to these principles during outpatient consultations.Material & MethodThe study was conducted at medical out-patient departments (OPDs) of two tertiary care hospitals (one public and one private hospital) of Lahore, selected using multi-stage sampling. 93 patients were selected from each hospital. Doctors' adherence to the principles of informed consent, privacy and confidentiality was (...) observed through client flow analysis performed by trained personnel. Overall patient perception was also assessed regarding these practices and was compared with the assessment made by our data collectors.ResultsSome degree of informed consent was obtained from only 9.7% patients in the public hospital and 47.8% in the private hospital. 81.4% of patients in the public hospital and 88.4% in the private hospital were accorded at least some degree of privacy. Complete informational confidentiality was maintained only in 10.8% and 35.5% of cases in public & private hospitals respectively. Informed consent and confidentiality were better practiced in the private compared to the public hospital (two-sample t-test > 2, p value < 0.05). There was marked disparity between the patients' perspective of these ethical practices and the assessment of our trained data collectors.ConclusionObservance of medical ethics is inadequate in hospitals of Lahore. Doctors should be imparted formal training in medical ethics and national legislation on medical ethics is needed. Patients should be made aware of their rights to medical ethics. (shrink)

In many countries, including patients are legally entitled to request copies of their clinical notes. However, this process remains time-consuming and burdensome, and it remains unclear how much of the medical record must be made available. Online access to notes offers a way to overcome these challenges and in around 10 countries worldwide, via secure web-based portals, many patients are now able to read at least some of the narrative reports written by clinicians. However, even in countries that have implemented (...) the practice many clinicians have resisted the idea remaining doubtful of the value of opening notes, and anticipating patients will be confused or anxious by what they read. Against this scepticism, a growing body of qualitative and quantitative research reveals that patients derive multiple benefits from reading their notes. We address the contrasting perceptions of this practice innovation, and claim that the divergent views of patients and clinicians can be explained as a case of epistemic injustice. Using a range of evidence, we argue that patients are vulnerable to epistemic injustice. Nonetheless, we conclude that the marginalisation of patients’ access to their health information exemplifies a form of epistemic exclusion, one with practical and ethical consequences including for patient safety. (shrink)

A lively topic of debate in decision theory over recent years concerns our understanding of the different risk attitudes exhibited by decision makers. There is ample evidence that risk-averse and risk-seeking behaviours are widespread, and a growing consensus that such behaviour is rationally permissible. In the context of clinical medicine, this matter is complicated by the fact that healthcare professionals must often make choices for the benefit of their patients, but the norms of rational choice are conventionally grounded in a (...) decision maker’s own desires, beliefs and actions. The presence of both doctor and patient raises the question of whose risk attitude matters for the choice at hand and what to do when these diverge. Must doctors make risky choices when treating risk-seeking patients? Ought they to be risk averse in general when choosing on behalf of others? In this paper, I will argue that healthcare professionals ought to adopt a deferential approach, whereby it is the risk attitude of the patient that matters in medical decision making. I will show how familiar arguments for widely held anti-paternalistic views about medicine can be straightforwardly extended to include not only patients’ evaluations of possible health states, but also their attitudes to risk. However, I will also show that this deferential view needs further refinement: patients’ higher-order attitudes towards their risk attitudes must be considered in order to avoid some counterexamples and to accommodate different views about what sort of attitudes risk attitudes actually are. (shrink)

In many countries, including patients are legally entitled to request copies of their clinical notes. However, this process remains time-consuming and burdensome, and it remains unclear how much of the medical record must be made available. Online access to notes offers a way to overcome these challenges and in around 10 countries worldwide, via secure web-based portals, many patients are now able to read at least some of the narrative reports written by clinicians (‘open notes’). However, even in countries that (...) have implemented the practice many clinicians have resisted the idea remaining doubtful of the value of opening notes, and anticipating patients will be confused or anxious by what they read. Against this scepticism, a growing body of qualitative and quantitative research reveals that patients derive multiple benefits from reading their notes. We address the contrasting perceptions of this practice innovation, and claim that the divergent views of patients and clinicians can be explained as a case of epistemic injustice. Using a range of evidence, we argue that patients are vulnerable to (oftentimes, non-intentional) epistemic injustice. Nonetheless, we conclude that the marginalisation of patients’ access to their health information exemplifies a form of epistemic exclusion, one with practical and ethical consequences including for patient safety. (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)

The research into patient involvement is seldom concerned with the significance of cultural and structural factors. In this discussion paper, we illustrate our considerations on some of the challenges in implementing the ideal of patient involvement by showing how such factors take part in shaping the ways in which the intentions to involve patients are converted to practical interventions. The aim was to contribute to the approach dealing with contextual and structural factors of significance for patient involvement. (...) With the idea of “institutional logics,” borrowed from the Danish scholar, Erik Riiskjær, we first demonstrate, with examples from our own research, how patient involvement is interpreted differently within the different logics. Then, we show how the different interpretations of patient involvement meet and conflict in mutual competition as the ideals are sought to be converted to practical interventions. At last, we argue that an adequate theoretical model for the development in the future health care system should be expanded with a “patient logic.”. (shrink)