Application of the community dialogues method to identify ethical values and priorities related to pharmacogenomics.

Given the expansion of genetics in medicine, there is a growing need to develop approaches to engage patients in understanding how genetics affects their health. Various qualitative methods have been applied to gain a deeper understanding of patient perspectives in topics related to genetics. Community dialogues (CD) are a bi-directional research method that invites community members to discuss a pertinent, challenging topic over the course of a multi-week period and the community members openly discuss their positions on the topic. Authors discuss the first application of the CD method to the topic of pharmacogenetics testing. Additional CD are needed to engage diverse participant populations on this topic to improve genetics literacy, enhance physician engagement and drive policy change.

Cultura de la salud en los familiares de niños sobre la vacunación. Policlínico "5 de Septiembre", enero-junio 2015 / Culture of health in family members of children about vaccination. Polyclinic "5 de Septiembre", January-June 2015

Objetivo: conocer desde la perspectiva social, los conocimientos y creencias de la población a partir del significado que las personas le atribuyen a las vacunas preventivas y al proceso de vacunación. Métodos: Se realizó un estudio exploratorio con familiares de niños de 0 a 24 meses pertenecientes al Policlínico 5 de Septiembre, municipio Playa, La Habana, que abarcó de enero a junio de 2015. Se utilizó un diseño mixto convergente o por triangulación de datos. Para la recolección de datos se utilizó la entrevista-cuestionario, entrevista a expertos y entrevista a informantes claves. Se elaboró una base de datos en Excel, la que se exportó al programa SPSS versión 19.0. En un primer momento, se realizó un análisis descriptivo, en el que se calcularon frecuencias absolutas y relativas para las variables de estudio. Para establecer las relaciones entre el nivel de conocimiento y algunas variables sociodemográficas, para el análisis de los datos cualitativos, se realizaron lecturas reiteradas de las transcripciones de las entrevistas a expertos e informantes claves y de las respuestas a las preguntas abiertas del cuestionario para la familiarización con el contenido de estos. Resultados: Se puso de manifiesto la vía institucional en la cultura de la salud que poseen los familiares con relación a las vacunas y el proceso de vacunación. Los familiares presentaban en su mayoría conocimientos insuficientes acerca de las vacunas y las enfermedades que protegen estas. No presentaban conocimientos sobre los eventos adversos graves o severos. El proceso de vacunación mostró gran significado para los familiares, asociados a experiencias positivas con este. Conclusiones: Se inicia un acercamiento a la cultura de la salud, poseída por un grupo de familiares, relativos a las vacunas preventivas y el proceso de vacunación en Cuba. Las madres refuerzan la responsabilidad de vacunar al niño/a como parte del cuidado de la salud de este. La cultura de la salud en los familiares de niños/as no incluye información distorsionada sobre las vacunas preventivas y su efectividad. Se nutre exclusivamente de la cultura científica, aunque no la reproduce en su totalidad. El proceso de vacunación es altamente valorado por los familiares, dada la importancia que le atribuyen, la confianza que tienen en el Programa Nacional de Inmunización, la satisfacción que muestran con la organización del servicio y la atención del personal de salud(AU)

Objective: to know, from the social perspective, the population´s knowledge and beliefs based on the meaning that people attribute to preventive vaccines and the vaccination process. Methods: An exploratory study was carried out with relatives of children from 0 to 24 months from "5 de Septiembre" community clinic in Playa municipality, Havana, from January to June 2015. A mixed convergent or triangulation design was used. Data collection was completed by questionnaire interview, expert interview and interview to key informants. A database was created in Excel, which was exported to the SPSS program version 19.0. Initially, a descriptive analysis was performed, in which absolute and relative frequencies were calculated for the study variables. Repeated readings were made of the transcripts of the interviews with experts and key informants and for the answers to the open questions of the questionnaire, to establish the analysis of the qualitative data, and for familiarization with their content. Results: It was shown the institutional pathway in health culture that family members have in relation to vaccines and the vaccination process. Most family members had poor knowledge about vaccines and the diseases they prevent. They did not show knowledge about serious or severe adverse events. The vaccination process showed great significance for family members, associated with positive experiences with it. Conclusions: This study initiates an approach to the health culture a group of family members had related to preventive vaccines and the vaccination process in Cuba. Mothers reinforce the responsibility of vaccinating the child as part of their child's health care. The health culture in family members of children does not include distorted information about preventive vaccines and their effectiveness. Their knowledge is fed exclusively by scientific culture, although it is entirety not reproduce. The vaccination process is highly valued by family members, given the importance they attach to it, the confidence they have in the National Immunization Program, the satisfaction they show with the organization of the service and the care of health personnel(AU)

Mobile health ethics and the expanding role of autonomy.

Mhealth technology is mushrooming world-wide and, in a variety of forms, reaches increasing numbers of users in ever-widening contexts and virtually independent from standard medical evidence assessment. Yet, debate on the broader societal impact including in particular mapping and classification of ethical issues raised has been limited. This article, as part of an ongoing empirically informed ethical research project, provides an overview of ethical issues of mhealth applications with a specific focus on implications on autonomy as a key notion in the debate. A multi-stage model of references to the potential of mhealth use for strengthening some or other form of self-determination will be proposed as a descriptive tool. It illustrates an assumed continuum of enhanced autonomy via mhealth broadly conceived: from patient to user autonomy, to improved health literacy, and finally to the vision of supra-individual empowerment and democratised, participatory health and medicine as a whole. On closer examination, however, these references are frequently ambivalent or vague, perpetuating the at times uncritical use of established autonomy concepts in medical ethics. The article suggests zooming in on the range of autonomy-related aspects against the backdrop of digital innovation and datafied health more generally, and on this basis add to existing frameworks for the ethical evaluation of mhealth more specifically.

Health Literacy and Clear Bedside Communication: A Curricular Intervention for Internal Medicine Physicians and Medicine Nurses.

Introduction: Communication remains the backbone of patient-provider relationships, and many health outcomes have been directly attributed to both effective and ineffective communication. We developed an educational intervention to improve bedside communication and increase use of health literacy principles, in part as a response to suboptimal inpatient satisfaction scores. Methods: Our intervention consisted of a beside communication curriculum among 37 attending medicine physicians, 76 internal medicine residents, and 85 bedside nurses. The 1- to 1.5-hour curriculum included a didactic session to teach health literacy principles, video demonstrations, group discussion, and role-play. Attending physicians' health literacy knowledge, attitudes, and confidence were evaluated using pre- and postsurveys. Evaluation of the curriculum included Likert-type questions and free-text responses. Results: Attending physicians' knowledge and confidence improved (74% correct pre, 100% correct post, p < .001; 4.41 pre, 4.68 post, p = .002, respectively). Certain attitude domains also improved, including importance of team introductions and nurse contributions to bedside rounds (p < .001). Both residents and nurses found the curriculum valuable and planned to incorporate it into their bedside rounding. Discussion: A brief, low-cost curricular intervention focusing on clear communication skills and health literacy principles resulted in significant improvements in knowledge and attitudes of attending physicians and was readily incorporated by resident physicians and nurses. This curriculum can be easily implemented in a variety of settings to improve bedside patient-physician communication.

Media Health Literacy, eHealth Literacy, and the Role of the Social Environment in Context.

Health literacy describes skills and competencies that enable people to gain access to, understand and apply health information to positively influence their own health and the health of those in their social environments. In an increasingly media saturated and digitized world, these skill sets are necessary for accessing and navigating sources of health information and tools, such as television, the Internet, and mobile apps. The concepts of Media Health Literacy (MHL) and eHealth Literacy (eHL) describe the specific competencies such tasks require. This article introduces the two concepts, and then reviews findings on the associations of MHL and eHL with several contextual variables in the social environment such as socio-demographics, social support, and system complexity, as a structural variable. As eHL and MHL are crucial for empowering people to actively engage in their own health, there is a growing body of literature reporting on the potential and the effectiveness of intervention initiatives to positively influence these competencies. From an ethical standpoint, equity is emphasized, stressing the importance of accessible media environments for all-including those at risk of exclusion from (digital) media sources. Alignment of micro and macro contextual spheres will ultimately facilitate both non-digital and digital media to effectively support and promote public health.

Ethical underpinnings for the development of health literacy in schools: ethical premises ('why'), orientations ('what') and tone ('how').

BACKGROUND: Schools are seen as crucial environments to influence and develop the health literacy of new generations, but without sufficient reflection on the ethical underpinnings of intentions and interventions around health literacy. In contrast, we argue here that ethics are fundamental to all education. The article adopts a 'One world' approach that generalizes broadly across the so-called Global North and Global South. It also generalizes across various age groups among school pupils, advocating age appropriate application of the arguments advanced. MAIN TEXT: Our analysis examines why health literacy should be promoted in schools and argues that the purpose should embrace the values of social justice and should not stop at individual and national cost benefit analysis. Discussion about the orientation of health literacy highlights meta-cognitive skills around critical thinking, self-awareness and citizenship rather than lists of practical skills. Finally, approaches to health literacy in classrooms are presented with an ethical tone that draws attention to the power relations responsible for health inequities and that does not assume that such power relations are the given framework for health literacy interventions and activities. These arguments are reinforced by urging that related debates address dynamic social realities such as international migration. CONCLUSIONS: We reiterate the need for ethical questions to be consciously and systematically addressed from early on, beginning with intentions to promote health literacy even before these intentions are translated into action, within the political space where education meets public health and health promotion. We underline again the context of fluidity and dynamism, as new challenges emerge within pedagogies and curricula, especially in response to changing populations in the society around.

Informed consent to HIV cure research.

Trials with highly unfavourable risk-benefit ratios for participants, like HIV cure trials, raise questions about the quality of the consent of research participants. Why, it may be asked, would a person with HIV who is doing well on antiretroviral therapy be willing to jeopardise his health by enrolling in such a trial? We distinguish three concerns: first, how information is communicated to potential participants; second, participants' motivations for enrolling in potentially high risk research with no prospect of direct benefit; and third, participants' understanding of the details of the trials in which they enrol. We argue that the communication concern is relevant to the validity of informed consent and the quality of decision making, that the motivation concern does not identify a genuine problem with either the validity of consent or the quality of decision making and that the understanding concern may not be relevant to the validity of consent but is relevant to the quality of decision making. In doing so, we derive guidance points for researchers recruiting and enrolling participants into their HIV cure trials, as well as the research ethics committees reviewing proposed studies.

Withholding differential risk information on legal consumer nicotine/tobacco products: The public health ethics of health information quarantines.

The United States provides an example of a country with (a) legal tobacco/nicotine products (e.g., snus, other smokeless tobacco, cigarettes) differing greatly in risks to health and (b) respected health information websites that continue to omit or provide incorrect differential risk information. Concern for the principles of individual rights, health literacy, and personal autonomy (making decisions for oneself), which are key principles of public health ethics, has been countered by utilitarian arguments for the use of misleading or limited information to protect public health overall. We argue that omitting key health relevant information for current or prospective consumers represents a kind of quarantine of health-relevant information. As with disease quarantines, the coercive effects of quarantining information on differential risks need to be justified, not merely by fears of net negative public health effects, but by convincing evidence that such measures are actually warranted, that public health overall is in imminent danger and that the danger is sufficient to override principles of individual autonomy. Omitting such health-relevant information for consumers of such products effectively blindfolds them and impairs their making informed personal choices. Moral psychological issues that treat all tobacco/nicotine products similarly may also be influencing the reluctance to inform on differential risks. In countries where tobacco/nicotine products are legally sold and also differ greatly in disease risks compared to cigarettes (e.g., smokeless tobacco and vape), science-based, comprehensible, and actionable health information (consistent with health literacy principles) on differential risks should be available and only reconsidered if it is established that this information is causing losses to population health overall.

Youth mental health interventions via mobile phones: a scoping review.

Mobile phone technologies have been hailed as a promising means for delivering mental health interventions to youth and adolescents, the age group with high cell phone penetration and with the onset of 75% of all lifetime mental disorders. Despite the growing evidence in physical health and adult mental health, however, little information is available about how mobile phones are implemented to deliver mental health services to the younger population. The purpose of this scoping study was to map the current state of knowledge regarding mobile mental health (mMental Health) for young people (age 13-24 years), identify gaps, and consider implications for future research. Seventeen articles that met the inclusion criteria provided evidence for mobile phones as a way to engage youth in therapeutic activities. The flexibility, interactivity, and spontaneous nature of mobile communications were also considered advantageous in encouraging persistent and continual access to care outside clinical settings. Four gaps in current knowledge were identified: the scarcity of studies conducted in low and middle income countries, the absence of information about the real-life feasibility of mobile tools, the need to address the issue of technical and health literacy of both young users and health professionals, and the need for critical discussion regarding diverse ethical issues associated with mobile phone use. We suggest that mMental Health researchers and clinicians should carefully consider the ethical issues related to patient-practitioner relationship, best practices, and the logic of self-surveillance.

The extent of surgical patients' understanding.

The notion that consent to surgery must be informed implies not only that information should be provided by the surgeon but also that the information should be understood by the patient in order to give a foundation to his or her decision to accept or refuse treatment and thus, achieve autonomy for the patient. Nonetheless, this seems to be an idyllic situation, since most patients do not fully understand the facts offered and thus the process of surgical informed consent, as well as the patient's autonomy, may be jeopardized. Informed consent does not always mean rational consent.

A NARRATIVE MODEL OF INFORMED CONSENT WITH YOUTH: DECISIONS AROUND ELECTIVE NON-MEDICAL CIRCUMCISION.

This paper examines narratives from young men seeking non-medical circumcision. Non-medical circumcision remains controversial, yet there are young men seeking elective circumcision. At our centre, young men 15 to 17 seeking elective circumcision were asked to write short pieces to reflect their understanding and reason(s) for wanting circumcision. Fourteen youth participated; four changed their minds about the procedure. Findings are described and evaluated within the medico-legal description of informed consent, and, from a narrative ethics perspective explicitly concerned with giving voice to patients. Persons are presumed capable of making their own health care decisions, yet, with youth, there may be a concern that an irrevocable decision may be coerced, or impulsive. Narrative reflections provide a means by which (i) misinformation/misunderstanding can be resolved (ii) coercion can be minimized and (iii) impulsivity mitigated. This paper describes our experience with narrative reflection and aims to facilitate informed decision-making for elective procedures among youth, and other potentially vulnerable populations.

Critical illness research involving collection of genomic data: the conundrum posed by low levels of genomic literacy among surrogate decision makers for critically ill patients.

Critical illness clinical trials that entail genomic data collection pose unique challenges. In this qualitative study, we found that surrogate decision makers (SDMs) for critically ill individuals, such as those who would be approached for study participation, appeared to have a limited grasp of genomic principles. We argue that low levels of genomic literacy should neither preclude nor be in conflict with the conduct of ethically rigorous clinical trials.

Language use in the informed consent discussion for emergency procedures.

BACKGROUND: The field of health literacy has closely examined the readability of written health materials to optimize patient comprehension. Few studies have examined spoken communication in a way that is comparable to analyses of written communication. PURPOSE: The study objective was to characterize the structural elements of residents' spoken words while obtaining informed consent. METHODS: Twenty-six resident physicians participated in a simulated informed consent discussion with a standardized patient. Audio recordings of the discussions were transcribed and analyzed to assess grammar statistics for evaluating language complexity (e.g., reading grade level). Transcripts and time values were used to assess structural characteristics of the dialogue (e.g., interactivity). RESULTS: Discussions were characterized by physician verbal dominance. The discussions were interactive but showed significant differences between the physician and patient speech patterns for all language complexity metrics. CONCLUSIONS: In this study, physicians spoke significantly more and used more complex language than the patients.

Ethical principles for physician rating sites.

During the last 5 years, an ethical debate has emerged, often in public media, about the potential positive and negative effects of physician rating sites and whether physician rating sites created by insurance companies or government agencies are ethical in their current states. Due to the lack of direct evidence of physician rating sites' effects on physicians' performance, patient outcomes, or the public's trust in health care, most contributions refer to normative arguments, hypothetical effects, or indirect evidence. This paper aims, first, to structure the ethical debate about the basic concept of physician rating sites: allowing patients to rate, comment, and discuss physicians' performance, online and visible to everyone. Thus, it provides a more thorough and transparent starting point for further discussion and decision making on physician rating sites: what should physicians and health policy decision makers take into account when discussing the basic concept of physician rating sites and its possible implications on the physician-patient relationship? Second, it discusses where and how the preexisting evidence from the partly related field of public reporting of physician performance can serve as an indicator for specific needs of evaluative research in the field of physician rating sites. This paper defines the ethical principles of patient welfare, patient autonomy, physician welfare, and social justice in the context of physician rating sites. It also outlines basic conditions for a fair decision-making process concerning the implementation and regulation of physician rating sites, namely, transparency, justification, participation, minimization of conflicts of interest, and openness for revision. Besides other issues described in this paper, one trade-off presents a special challenge and will play an important role when deciding about more- or less-restrictive physician rating sites regulations: the potential psychological and financial harms for physicians that can result from physician rating sites need to be contained without limiting the potential benefits for patients with respect to health, health literacy, and equity.