South Asia has vast unmet health needs especially in rural areas. Community-based medical education can partly address these needs and can serve to introduce students to a number of community health problems. Climate change has the potential to produce major challenges for health and food security in South Asia. Medical students should be taught about climate change and methods to tackle its impact on health. The pharmaceutical industry in South Asia aggressively promotes their products. Disease mongering is becoming more common in South Asia. Educational initiatives to sensitize students regarding promotion are common in developed countries. In Nepal, an educational initiative critically looks at the industry’s promotional tactics. Similar initiatives are required in other medical schools. The nature of the doctor-patient relationship is changing. An increasing demand for patient autonomy and for their involvement in therapeutic decisions is seen. Access to the internet and internet sources of health information is increasing. Medical schools should address these issues as well. Medical Humanities modules and courses in communication skills are required. Research can play an important role in alleviating the health problems of South Asia. Students should be taught the basics of scientific research and student research should be strongly encouraged.
Doc 12 : The internet doctor and medical ethics. Ethical implications of the introduction of the Internet into medical encounters
In this article, consultation via the Internet and the use of the Internet as a source of medical information is examined from an ethical point of view. It is argued that important ethical aspects of the clinical interaction, such as dialogue and trust will be difficult to realise in an Internet-consultation. Further, it is doubtful whether an Internet doctor will accept responsibility. However, medical information via the Internet can be a valuable resource for patients wanting to know more about their disease and, thus, it is a means to enhancing their autonomy.
Doc 14 : Critical Theory and Medical Care in America: Changing Doctor–Patient Dynamics
This paper examines the potential for theory to adapt to changing contexts of health in the western world. The commoditization of health and the ideology of biomedicine affects social life in creating dependency, social control, and vast inequalities. At the same time, increased access and diversity of consumer health knowledge as evidenced by the use of the Internet and the sharp rise in alternative medicine point to a different dialectic between doctor and patient and the potential for transforming diagnostic, treatment, and economic components of health care. Recent trends suggest increasing patient autonomy and the possibility of a re-emergence of medical pluralism. New theoretical directions should be considered by social scientists in order to more fully understand these changes.
Doc 26 : How Do Forced-Choice Dilemmas Affect Multiracial People? The Role of Identity Autonomy and Public Regard in Depressive Symptoms
The present study reports on correlational data gathered from an Internet survey to explore why forced-choice dilemma situations relate to depressive symptoms among multiracial people (N = 317). Specifically, a model was tested that explored the role of identity autonomy (the extent to which multiracial people feel they can racially identify however they desire) and public regard (the extent to which multiracial people think others value their multiracial identity). The results of the model suggest that forced-choice dilemmas predict greater depressive symptoms because forcedchoice dilemmas may promote greater beliefs that their multiracial identity is devalued in society and more generally restrict identity autonomy. Implications are discussed in terms of multiracial health and public policies regarding assessments of racial identities. jasp_634 1657..1677 Researchers widely accept that people of multiracial heritage face unique challenges associated with their membership in multiple racial categories. These unique challenges have been proposed as precipitating factors in racial identity development, overall psychological health, and the occurrence of problem behaviors, including poor academic performance among multiracial people (Gillem, Cohn, & Throne, 2001; Logan, 1981; Rockquemore & Brunsma, 2002a, 2002b; Shih & Sanchez, 2005). In a review of work on multiracial health, Shih and Sanchez proposed that forced-choice dilemmas may contribute to multiracial people’s psychological well-being. Thus, the present study is designed to examine empirically the possible link between self-reported experiences of forced-choice dilemmas and psychological wellbeing, as well as the mechanisms that may account for the relationship. Forced-choice dilemmas refer to situations in which multiracial people are asked or pressured to choose between their multiple racial identities, rather than being allowed to identify with their multiple racial identities (Standen, 1996). Because of the difficulties multiracial people face, many theorists have erroneously predicted that multiracial people will exhibit worse
Doc 55 : Medical Cyber–Physical Systems: The Early Years
h MEDICAL CYBER–PHYSICAL SYSTEMS (MedCPSs) are life-critical, context-aware, and/or networked systems of medical devices. Traditional clinical scenarios can be viewed as closed-loop systems where caregivers are the controllers, medical devices act as sensors and actuators, and patients are the ‘‘plants.’’ MedCPSs alter this view by introducing additional computational entities that aid caregivers. Such systems are increasingly used in hospitals to provide high-quality continuous care for patients. The need to design complex MedCPSs that are both safe and effective presents numerous challenges, including achieving high assurance in medical system software, interoperability, context-aware intelligence, autonomy, security and privacy, and device certification. My first research activity in MedCPSs started in 2002whenDavidHislopattheAROandPaulJonesat
Doc 69 : Ethical aspects of eHealth - systematic review of open access articles
The Internet has changed the way of receiving health information and health care services. Improving health care locally, regionally and globally by using information and communication technology is an important goal of eHealth and its applications. The aim of this review is to describe different ethical aspects of eHealth applications. This article is a systematic review. Relevant literature was searched from databases and 18 chosen articles were analyzed by using a data based qualitative content analysis. Six ethical aspects concerning eHealth and its applications were found from the reviewed literature: autonomy, privacy, confidentiality, consent, equality of service availability and beneficence. eHealth applications have a potential to improve health care services comprehensively, especially in remote areas. There are still ethical concerns that need to be addressed as the technology continues to develop. eHealth can be an effective addition to traditional health care services as long as the health and wellbeing of patients remain as the central point and eHealth applications are not used only to gain financial savings.
Doc 99 : Internet-based depression prevention over the life course: a call for behavioral vaccines.
https://doi.org/10.1016/j.psc.2010.11.002 Benjamin W. Van Voorhees Nicholas Mahoney Rina Mazo Alinne Z. Barrera Christopher P. Siemer Tracy R. G. Gladstone Ricardo F. Muñoz
Technology-based approaches for the prevention of depression offer considerable benefits including easy access, patient autonomy, and nonconsumable services that are autonomous from traditional (face-to-face) interventions. The authors have previously worked to develop Internet interventions based on the frameworks for conventional, face-to-face effective community-based interventions, and propose to integrate these models into a vaccine aptly applicable to technology-based delivery. This article reviews the literature on Internet-based depression prevention programs using this behavioral vaccine development model, reviewing literature relevant to each component of the model in turn.
Doc 109 : Towards logic models for the analysis and evaluation of the criticalities in chronic patients’ care paths
Purpose – The aim of the present paper is to examine how the introduction of information and communication technologies (ICTs) can have positive implications in a territorial context, where healthcare organizations are characterized by limited organizational independence and lack of individual statutory autonomy, with limited level of integration between the involved parties (healthcare operators, managers, and patients) and an uneven management of data and of information‐sharing.Design/methodology/approach – The approach taken was an investigation based on a combination of quantitative and qualitative methods for information‐gathering and data‐analysis in the context of diabetes care. A case study approach was adopted with the aim of enhancing general practitioners’ (GPs’) performance levels through an evaluation monitoring and by controlling care paths dynamics.Findings – The realization of the target care path for chronic–degenerative pathologies in the Local Health Trust “Naples 4” in Campania Region …
Doc 127 : Internet Use Frequency and Patient-Centered Care: Measuring Patient Preferences for Participation Using the Health Information Wants Questionnaire
The Internet is bringing fundamental changes to medical practice through improved access to health information and participation in decision making. However, patient preferences for participation in health care vary greatly. Promoting patient-centered health care requires an understanding of the relationship between Internet use and a broader range of preferences for participation than previously measured.To explore (1) whether there is a significant relationship between Internet use frequency and patients’ overall preferences for obtaining health information and decision-making autonomy, and (2) whether the relationships between Internet use frequency and information and decision-making preferences differ with respect to different aspects of health conditions.The Health Information Wants Questionnaire (HIWQ) was administered to gather data about patients’ preferences for the (1) amount of information desired about different aspects of a health condition, and (2) level of decision-making autonomy desired across those same aspects.The study sample included 438 individuals: 226 undergraduates (mean age 20; SD 2.15) and 212 community-dwelling older adults (mean age 72; SD 9.00). A significant difference was found between the younger and older age groups’ Internet use frequencies, with the younger age group having significantly more frequent Internet use than the older age group (younger age group mean 5.98, SD 0.33; older age group mean 3.50, SD 2.00; t436=17.42, P<.01). Internet use frequency was positively related to the overall preference rating (γ=.15, P<.05), suggesting that frequent Internet users preferred significantly more information and decision making than infrequent Internet users. The relationships between Internet use frequency and different types of preferences varied: compared with infrequent Internet users, frequent Internet users preferred more information but less decision making for diagnosis (γ=.57, P<.01); more information and more decision-making autonomy for laboratory test (γ=.15, P<.05), complementary and alternative medicine (γ=.32, P<.01), and self-care (γ=.15, P<.05); and less information but more decision-making autonomy for the psychosocial (γ=-.51, P<.01) and health care provider (γ=-.27, P<.05) aspects. No significant difference was found between frequent and infrequent Internet users in their preferences for treatment information and decision making.Internet use frequency has a positive relationship with the overall preferences for obtaining health information and decision-making autonomy, but its relationship with different types of preferences varies. These findings have important implications for medical practice.
Doc 148 : What can be expected of information and communication technologies in terms of patient empowerment in health
Purpose – Implementing information and communication technologies (ICT) is often mentioned as a strategy that can foster public involvement and responsibility in health. The purpose of this paper is to provide a better understanding of the possibilities and issues afforded by the social uses of ICT for personal empowerment in health.Design/methodology/approach – The paper discusses evidence from four case studies that characterize current computerization and networking processes in health. The studies shared a global framework comprising four interpretative paradigms of personal empowerment: the professional, technocratic, consumerist and democratic paradigms.Findings – The results show the coexistence of four empowerment logics in ICT use. Two trends proved dominant: a strengthening of the control and standardization processes tied to the typical power relationships in health, and a reinforcement of personal autonomy and self‐assertion processes, either through commercial relationships or through the soc…
Doc 164 : Marital closeness, autonomy, mastery, and depressive symptoms in a U.S. Internet sample
This Internet survey tests a theory that meeting needs through marital closeness (naming spouse confidant and emotional support; perceiving oneself to be named both by the spouse; and sexual satisfaction), autonomy, and mastery protects against depressive symptoms. The U.S. sample includes 1,163 relatively wealthy and educated married respondents aged 19–84 years. The regression model, controlling for sociodemographic factors, social integration, self-rated health, and gender interactions, explained more than half the variability in respondents’ depressive symptoms. Regardless of age, wives who were closer to their husbands were less depressed than those who were less close. Older husbands were less depressed than younger ones. Marital closeness was protective for husbands at all ages with its absence particularly problematic at younger ages.
Doc 179 : Sağlık Bakanlığı Hastanelerinde Finansal Verilerin Konsolidasyonu
Ministry of Health Hospitals Financial Data Consolidation With changes around the world, the functions of the Ministry of Health are promoted to roles of regulatory, supervisory and delivery of primary health care. Delivery of second and tertiary level health services in general will be left to the Public Hospital Associations with administrative and financial autonomy. This research introduce a model shows how to form and consolidate financial data in the Public Hospital Associations. When Constituting this model, financial data from 816 hospitals and health centers except Oral and Dental Health Centers in the secondary and tertiary care under the Ministry of Health were used. The research was made of two phases to consolidate financial statement. First, fusion tables were created by merging the data from the four legally independent financial systems (the General Budget, the Revolving Fund, Chattel and Immovable Property Financial System). Then, based on international and national accounting standards, the fusion tables of 816 hospitals and health centers were consolidated as they were a single enterprise and explicit information on the methodology of consolidation was provided. For association managers, this model is thought of as a primary source of information as to how to consolidate financial data
Doc 180 : Citizen involvement in future drug R&D: a Danish Delphi study
This article adopts a prospective approach in an attempt to explore the potential benefit of citizen involvement in decision making concerning future drug R&D. This is one of the first Delphi studies to fully utilize internet technology to collect and process data. The results show an increasing individual autonomy among respondents, which also affects the drug R&D process in general. Human, liberal and ethical values are reported as crucial values to citizens. On this basis, respondents reported that patient organizations, representative citizen groups and ethical councils can contribute with important input to ensure these values in decision making concerning future drug R&D. Paying attention to citizen needs, demands and ideas may protect the research, development and eventual marketing of unacceptable drugs on a societal and ethical level.
Doc 185 : Telecare delivery of health and social care information
If the growing population of older people are to be effectively supported in their own homes, new ways of delivering care must be found. In addition, individual users of health and social services need greater empowerment and autonomy. These imperatives provide opportunities for the creative use of information and communication technology. One telecare approach that can be used to maintain or improve the quality of life for older people is the provision of health and social care information in electronic form.This paper identifies and discusses issues that contribute to the information agenda for older people. It describes the background to the present UK health strategy, most significantly the shift from institutional based care towards care at home, with the associated change of priorities within health and social care agencies. It suggests that different methods of information delivery are needed to meet the requirements of older people, and directs information providers towards the use of paper-based …
Doc 188 : Continuing Bonds, Risk Factors for Complicated Grief, and Adjustment to Bereavement
This study examined type of continuing bonds (CB) expression in relation to risk factors for complicated grief and measures of bereavement-related adjustment. Externalized CB expressions involving illusions and hallucinations with the deceased were distinguished from internalized CB expressions involving use of the deceased as an autonomy promoting secure base. 502 bereaved participants completed over the internet a CB measure assessing externalized and internalized CB along with various known risk-factor measures that included cause of death (i.e., violent vs. non-violent death), responsibility for the death, and attachment style as well as measures of psychological adjustment that included complicated grief symptoms, perceived physical health, and personal growth. As predicted, externalized CB was positively associated with violent death and responsibility for the death, whereas internalized CB was negatively associated with these risk factors as well as uniquely positively linked to personal growth. The implications of the findings for the role of CB in adjustment are discussed.
Doc 199 : Direct-to-consumer genetic testing: access and marketing.
The American College of Medical Genetics (ACMG), in their “Statement on Direct-to-Consumer Genetic Testing”1 (in this issue of Genetics in Medicine), argues for the involvement of appropriately qualified health care professionals in the ordering and interpretation of genetic tests, and the counseling of individuals and families regarding the meaning and significance of the test results. They point out the potential harms that may result if such health professionals are not involved, including misused tests, misinterpreted results, and misguided follow-up. We feel that this statement from the ACMG will not only educate the public and professionals about this issue, but will also lead to further discourse. In this commentary, we will provide a brief background for these discussions. One argument in favor of direct-to-consumer testing relies on respect for patient autonomy. Such reliance, however, ignores the need for information if autonomy and decisionmaking are to be meaningful. We acknowledge and cherish the autonomy of individuals to make decisions regarding their own health care. Geneticists show respect for and uphold autonomy through nondirective counseling. We agree with the ACMG, however, that decisions regarding whether and how an individual wishes to use a genetic test, and the information derived from it, should be informed by discussions with a knowledgeable health professional. Others argue that direct access to genetic testing reduces health care costs by eliminating the need for consultation with trained professionals. However, this argument fails to account for the costs likely to result from the uninformed and unnecessary uses of genetic tests and from the adverse consequences of inappropriate responses to test results, whether positive or negative, valid or invalid. Such consequences can include underuse and overuse of health care resources. Concerns regarding direct access to genetic testing are closely tied to concerns about direct-to-consumer advertising and marketing of genetic testing. Arguments have been made for direct-to-consumer marketing of genetic tests based on experience with direct-to-consumer advertisement of prescription drugs.2 Benefits cited by advocates include increased compliance and facilitation of patient-physician communication (based on the required “talk with your doctor” phrase). In the context of genetic tests, benefits of direct-to-consumer advertising may include an increased awareness of the importance of family history, the relation between risk and family history, the role of genetics in disease, and the value of genetic counseling. When advertisements for genetic tests are presented on the Internet or in the media by a commercial entity, however, significant clinical information may be missing. For example, there is frequently no information provided regarding the clinical validity and utility of the test. Consumers are not advised, for example, whether a test will provide the answers they are seeking regarding a particular disorder. An individual consumer is unlikely to know the positive predictive value (probability that a positive test result indicates the person will develop the disorder) or the negative predictive value (probability that a person will not develop a disorder if the test does not find a mutation) of the test. The consumer also is unlikely to know the performance characteristics of that test in the specific context in which they are requesting the test result; e.g., test performance may be very different in the presence or absence of a positive family history for the disease, or in the presence or absence of a known mutation. A consumer also may not be able to determine whether a particular genetic test is appropriate for them in the absence of consultation with a trained health professional.2 For example, a woman with a family history of breast cancer who is concerned about her risk for breast cancer (consultand) would do better to have a sample from an affected relative who meets the criteria for familial breast cancer (proband) tested for mutations in BRCA1 and BRCA2 than to have her own sample tested. If the proband did not have a BRCA1 or BRCA2 mutation, then the consultand would be at no different risk for breast cancer before or after she was tested. An appropriately trained health professional can help the consultand identify the best proband(s) for initial testing in order for the consultand to receive the best and most useful information from their genetic testing.2,3 Without this kind of health professional involvement and counseling, direct-to-consumer advertising may reinforce an erroneous deterministic interrelationship between genotype and phenotype.4 An appropriately trained health professional also would be able to advise the consultand regarding the actual information that may be available from the test, as well as its potential utility. The difficulties encountered in the interpretation of genetic test results are well-recognized.3 The public generally expects to receive a definitive, yes/no answer from a medical test. Results from genetic tests often inform only the estimation of the probability of developing a disease or the predictive risk of From the Departments of Human Genetics and Pediatrics, David Geffen School of Medicine at UCLA; UCLA Center for Society, the Individual and Genetics; and Mattel Children’s Hospital at UCLA, Los Angeles, California.
Doc 205 : Conservation of autonomy: Toward a second-order perspective on psychosomatic symptoms
Abstract Most studies of the families of people suffering from psychosomatic disorders can be seen to reflect the perspective of first-order cybernetics. In this the focus is on interaction within families. If a shift is made to the more modern perspective of second-order cybernetics, the emphasis changes to fall on the autonomy of various levels of system. In this paper, psychosomatic symptoms are described and illustrated as the expression of ideas aimed at the conservation of autonomy, both at an individual and a family level. The implications of such a changed perspective for the treatment of psychosomatic disorders are highlighted.
Doc 225 : The Emergence of National Electronic Health Record Architectures in the United States and Australia: Models, Costs, and Questions
Emerging electronic health record models present numerous challenges to health care systems, physicians, and regulators. This article provides explanation of some of the reasons driving the development of the electronic health record, describes two national electronic health record models (currently developing in the United States and Australia) and one distributed, personal model. The US and Australian models are contrasted in their different architectures (“pull” versus “push”) and their different approaches to patient autonomy, privacy, and confidentiality. The article also discusses some of the professional, practical, and legal challenges that health care providers potentially face both during and after electronic health record implementation.
[J Med Internet Res 2005;7(1):e3]
Doc 228 : Primary sources of health information: comparisons in the domain of health attitudes, health cognitions, and health behaviors.
The recent growth in consumer autonomy in health care accompanied by the surge in the use of new media for health information gathering has led to an increasing scholarly interest in understanding the consumer health information search construct. This article explores consumer health information seeking in the realm of the primary sources of health information used by consumers. Based on an analysis of the 1999 HealthStyles data, the paper demonstrates that active communication channels such as interpersonal communication, print readership, and Internet communication serve as primary health information sources for health-conscious, health-information oriented individuals with strong health beliefs, and commitment to healthy activities. On the other hand, passive consumption channels such as television and radio serve as primary health information resources for individuals who are not health-oriented. Media planning implications are drawn from the results, suggesting that broadcast outlets with an entertainment orientation are better suited for prevention campaigns. Such channels provide suitable sites for entertainment-education. On the other hand, print media, interpersonal networks, and the Internet are better suited for communicating about health issues to the health-active consumer segment.
Doc 235 : Reflections on the centrality of power in medical sociology: An empirical test and theoretical elaboration
This paper explores the contemporary relevance of sociological theorisations centred on medical power, including the medical dominance and deprofessionalisation theses. To achieve this it examines two issues that have been tentatively linked to the relative decline of the power and autonomy of biomedicine - complementary and alternative medicine (CAM) and the Internet-informed patient. Drawing on these two different but interconnected social phenomena, this paper reflects on the potential limitations of power-based theorisations of the medical profession and its relationship to patients and other non-biomedically situated professional groups. It is argued that power-based conceptual schemas may not adequately reflect the non-linear and complex strategic adaptations that are occurring among professional groups.
Doc 271 : The management and policy challenges of the globalisation effect of informatics and telemedicine
Managers and policy makers face new and as yet unrecognised challenges–particularly loss of control–through the application of new information technologies in healthcare. Whilst informatics and telemedicine are important developments, the potential for adverse organisational and societal effects should be recognised and anticipated. Health organisations are frequently seen as circumscribed networks, and these in turn form local alliances with related organisations. Information technologies are frequently construed as relating to operational systems within organisations, not least electronic patient record systems and diagnostic systems. These can then be linked to new generation health business systems, to provide accurate management information at low additional cost. However, this pair of assumptions is now seriously flawed, due to the effects of the latest developments in health informatics and telemedicine. In particular, telecommunications and Internet technologies render ineffectual previous external barriers of distance and national boundaries, whilst within the organisation the combination of knowledge bases with information technologies creates tendencies towards internal autonomy. Organisational and national policy control of health care face direct and radical challenges through perverse effects of otherwise beneficial developments, and early action is needed.
Doc 309 : Computation and Networking - Compunetics - promoting digital inclusion of elderly, cognitively impaired, and Alzheimer??s patients
Our society is aging fast, and the prevalence of chronic, potentially disabling diseases is increasing exponentially, with a sizeable proportion of cognitively impaired and demented people. We urgently need new strategies for large scale physical and cognitive rehabilitation in our aging societies. The size of the need, however, contrasts with the scarcity of resources of the existing health systems. The degree of dependence on the activities of the daily living (ADLs) and the measure of cognitive impairment are good health indicators. Computation and cooperative networking can be extremely instrumental to help meet the demands of daily life. Health promotion might be well supported by interactive devices like personal computers, cell phones, global positioning devices, and electronic banking. These technologies can be reached by the Internet, ubiquitous computation, artificial intelligence, and telecommunications and they can be fundamental to maintain autonomy and independence of cognitively impaired people, helping them through their ADLs. Digital inclusion of the aged and cognitively impaired is a promising challenge, and should be based on the sound principles of human-computer interaction, networking, neuroscience and gerontology. The core objective is to construct environments that could empower cognitively impaired people and Alzheimer´s patients, enabling them to exercise their citizenship, participate and share with their community their life experiences and aspirations.
Doc 321 : The Electronic Patient Record as a Meaningful Audit Tool:Accountability and Autonomy in General Practitioner Work
Health authorities increasingly request that general practitioners (GPs) use information and communication technologies such as electronic patient records (EPR) for accountability purposes. This article deals with the use of EPRs among general practitioners in Britain. It examines two ways in which GPs use the EPR for accountability purposes. One way is to generate audit reports on the basis of the information that has been entered into the record. The other is to let the computer intervene in the clinical process through prompts. The article argues that GPs’ ambivalence toward using the EPR makes them active in finding ways that turn the EPR into a meaningful tool for them, that is, a tool that helps them provide what they see as good care. The article’s main contribution is to show how accountability and autonomy are coproduced; less professional autonomy does not follow from more requests to document one’s work. Instead, new forms of autonomy are produced in the sociotechnical network that is made up b…
Doc 344 : Development and Evaluation of an Internet-Based Program to Improve the Mental Health and Wellbeing of Young Men
Purpose – This paper aims to describe the development of WorkOut, an Internet-based program designed to help young men overcome the barriers towards help-seeking and to build the skills they need to understand and manage their own mental health. Information and communication technologies (ICT) hold great potential to significantly improve mental health outcomes for hard-to-reach and traditionally underserved groups. Internet-based programs and mobile phone applications may be particularly appealing to young men due to their convenience, accessibility and privacy and they also address the strong desire for independence and autonomy held by most men. Design/methodology/approach – In this paper, we describe the design process itself, and the strategies used for multi-disciplinary collaboration. The initial evaluation process and results are also described which consisted of three distinct phases: website statistics; one-on-one user testing; and pilot interviews. Findings – The results suggest that WorkOut ha…
Doc 358 : In Support of the Abolishment of Supervisory and Collaboration Clauses
Abstract The effective use of nurse practitioners (NPs) could help alleviate the current health care crisis by providing patients with access to excellent health care at reasonable rates. In order for NPs to be effectively used, barriers to independent practice must be eliminated. State supervisory and collaborative clauses hinder access to effective primary health care by restricting the autonomy of NPs; therefore, states should not implement such clauses in their nurse practice acts. NPs provide competent primary care that should expanded to digital settings via telemedicine and cybermedicine without being limited by the bounds of the physical geographic market.
Doc 364 : Midwives with mobiles: A dialectical perspective on gender arising from technology introduction in rural Indonesia:
Mobile phones were introduced to rural midwives in tsunami-affected Indonesia, allowing them to contact medical experts and communicate with patients. Ninety-two interviews were conducted with midwives, coordinators, doctors, and village representatives. This study applies a dialectical perspective to supplement the analytical frame of the ICT for healthcare development model (Chib et al., 2008), by addressing the multi-dimensionality of benefits and barriers. The theory of dialectical tension (Baxter and Montgomery, 1996) situates the conceptual discussion around the struggles between autonomy and subordination within gender roles, personal growth versus technological competency, and issues of economic and resource control in traditional hierarchies. We find that midwives engage in legitimization strategies, develop peer support, and focus on strategic issues to develop the capacity for agency and autonomy, despite socio-organizational barriers. Specific recommendations are offered, focusing on the resou…
Doc 374 : Invited commentary: Professionalism in 21st-century medicine.
Medical professionalism is a complex and multifaceted subject. In 2002, “Medical Professionalism in the New Millennium: A Physician Charter” was published in the Annals of Internal Medicine and elsewhere (1). This document stressed the primacy of patient welfare, patient autonomy, and social justice. The charter is discussed in Dr. Kirk’s excellent Kitchens Lecture given at Baylor University Medical Center (2). Dr. Lloyd Kitchens was an exemplary clinician who personified the finest qualities of a physician. His article on medical etiquette published in these Proceedings several years ago still rings true (3).
What role does professionalism have in the current medical arena? Certainly patient welfare, autonomy, and social justice are core principles. Paradoxically, the challenges of delivering health care are becoming ever greater at the same time that scientific medicine is advancing as never before. How can we provide appropriate care for our patients in a universal, comprehensive, and equitable manner (4–6)? How can medicine fulfill its social contract with society?
William Osler, the great clinician and educator who lived between 1849 and 1919, represents one exemplar of medicine as a noble profession and a calling (7, 8). His many aphorisms and essays speak eloquently to the heart of the doctor-patient relationship. His observation that “the old art can not possibly be replaced by, but must be incorporated in, the new science” is as true today as it was 100 years ago (9). Osler welcomed scientific advances in medicine because he knew they would enable him to take better care of his patients. He was at the forefront of medical science and no doubt would still be if he were alive today. In addition to his focus on science, he emphasized that doctors should pay special attention to the patient, not just the disease. His friendliness, generosity, and respect for others have had an enduring influence on generations of students and physicians. In an essay entitled “The Reserves of Life” he likened a medical career to a race through London and told students at St. Mary’s Hospital Medical School that “in ordinary training you run the course over, but life’s race is run but once; and, though the course may seem long to you, it really is very short, but very hard to learn. Fortunately, you are not alone on the track, as your brothers are ahead, and if you are willing there is always help at hand” (9). We should heed this counsel. Guidance from trusted colleagues is a valuable but sometimes underutilized asset. Many of William Osler’s precepts remain applicable today.
Perhaps the central pillar of professionalism is competence (6, 10, 11). Unless a physician is competent, he or she cannot be either professional or ethical. Kindness and compassion are other qualities which, though not mentioned in the physician charter, are fundamental to the care of ill people. Patients are cared for individually; whether in an office, clinic, hospital, or on a battlefield, the doctor-patient relationship is a one-on-one encounter. A physician must obtain a history, elicit pertinent positive and negative physical findings, and order selected laboratory tests. He or she must analyze these data in the context of an ever-expanding galaxy of scientific knowledge. What is the diagnosis? What constitutes the best treatment for this patient? What can be done to return this individual to as close to normal daily activities for him or her as possible? The answers to these challenging questions are sought every time a doctor sees a patient (7). In our current competitive and costly environment, finding these answers becomes daunting. We need help in responding appropriately and effectively (12, 13). This is our responsibility, and we must be accountable.
So who is a true professional? Dr. Michael LaCombe describes a physician who represents the consummate example:
I knew a doctor once who was honest, but gentle with his honesty, and was loving, but careful with his love, who was disciplined without being rigid, and right without the stain of arrogance, who was self-questioning without self-doubt, introspective and reflective and in the same moment, decisive, who was strong, hard, adamant, but all these things laced with tenderness and understanding, a doctor who worshipped his calling without worshipping himself, who was busy beyond belief, but who had time—time to smile, to chat, to touch the shoulder and take the hand, and who had time enough for Death as well as Life (14).
Professionalism and being professional are core competencies now adopted by accredited residency and fellowship training programs. Their impact extends far beyond training, however. Dr. Kirk’s fine address and the wisdom of role models such as William Osler, Lloyd Kitchens, and Michael LaCombe will help us follow the right path (15).
Doc 384 : Balancing urgency, age and quality of life in organ allocation decisions—what would you do?: a survey
Purpose: Explore public attitudes towards the trade-offs between justice and medical outcome inherent in organ allocation decisions. Background: The US Task Force on Organ Transplantation recommended that considerations of justice, autonomy and medical outcome be part of all organ allocation decisions. Justice in this context may be modeled as a function of three types of need, related to age, clinical urgency, and quality of life. Methods: A web-based survey was conducted in which respondents were asked to choose between two hypothetical patients who differed in clinical urgency (time to death Results: A pool of 1600 people were notified via email about the survey; 623 (39%) responded. Respondents preferred giving organs to younger people up to an age difference of Conclusions: It appears that clinical urgency is only one of many factors influencing attitudes about allocation decisions and that respondents may invoke different principles of fairness depending the relative clinical status of patients.
Doc 394 : Ethical Dimensions of Supervision in Community Assistance of Chronic Patients
The supervision process of community care services offered to individuals suffering from chronic illnesses, beyond an exchange of information between professionals in different power relations should be conducted on a formal basis, to be conducted under a partnership between the multidisciplinary team intervention, the intake supervisor and community where the intervention takes place, in accordance with the requirements of the domain in which the supervision is realized, and on a specific ethic base which has as central the value of social and personal autonomy of social service recipients of community-based rehabilitation. Supervision, as a method of support for professionals, aims to improve workplace performance by removing stress that can occur and affect work performance. The supervisor support and increase the supervisee’s motivation, developing a performance work environment, following the highest professional standards and ethics of intervention. In this paper we propose to ! # $ % $ ! # $ % $ & % ’ ( ! # $ % $ )-mail Address: si_damian@yahoo.com * + , , / 012 ) 3 , 4 4 * 5 6 )37 Post # $ of Medicine and Pharmacy Gr T. Popa Iasi, Doctor in Sociology (University Al. I. Cuza Iasi9 e-mail: , 6$; 3,? > # $ % Email: 0;< 4 Antonio SANDU ! # $ % $ $ 3,? ! # $ 7 , C <F ,! # $ * )-mail Address: GH1;$ * 00/ < / ) + 4 4 2 * 5
Doc 403 : Nurses’ autonomy: influence of nurse managers’ actions.
Background. Autonomy plays an important part in nurses’ job satisfaction and retention, but the literature shows that they are often dissatisfied with this aspect and want better working conditions and greater autonomy in decision-making.
Aims. The aim of this study was to examine the role that nurse managers have in enhancing hospital staff nurses’ autonomy.
Methods. The study used a comparative descriptive survey design. Data collection took place over the Internet through the use of selective listservs in the United States of America (USA), Canada, and the United Kingdom. Of the 317 hospital nurses participating, 264 (83·3%) were from the USA. Differences relating to nurses, nurse managers, and hospital settings were controlled in the analysis.
Results. Nurses were more autonomous in making patient care decisions than unit operational decisions, and they perceived their autonomy to be at a moderate level. Those who were autonomous in patient care decision-making were also likely to be autonomous in unit operation decision-making. Nurse managers’ actions had a strong relationship with nurses’ autonomy in deciding on patient care and unit operation decisions, and with total autonomy. The three important variables that were reported by staff nurses to increase their autonomy were supportive management, education and experience. The three most important factors that were reported to decrease nurses’ autonomy were autocratic management, doctors and workload.
Discussion. Technical issues such as the availability of listservs, valid e-mails, viruses, and familiarity with the Internet and its applications were the major limitations of this study. Nurses’ autonomy over patient care and unit operations decisions needs to be enhanced, and nurse managers should promote this. Similarly, there is a role for nurse education, both in preregistration programmes and in continuing education for managers. Further research needs to explore the barriers that nurses face in autonomous decision-making and how nurses’ participation in unit operational decisions can be promoted.
Conclusions. Hospital staff nurses have moderate autonomy which could be increased by more effective support from nurse managers. The use of electronic questionnaires is a promising data collection method.
Doc 423 : Health and psychosocial effects of flexible working hours
OBJECTIVE: To examine whether any impairments in health and social lives can be found under different kinds of flexible working hours, and whether such effects are related to specific characteristics of these working hours. METHODS: Two studies - a company based survey (N=660) and an internet survey (N=528) - have been conducted. The first one was a questionnaire study (paper and pencil) on employees working under some ‘typical’ kinds of different flexible working time arrangements in different companies and different occupational fields (health care, manufacturing, retail, administration, call centres). The second study was an internet-based survey, using an adaptation of the questionnaire from the first study. RESULTS: The results of both studies consistently show that high variability of working hours is associated with increased impairments in health and well-being and this is especially true if this variability is company controlled. These effects are less pronounced if variability is self-controlled; however, autonomy does not compensate the effects of variability. CONCLUSIONS: Recommendations for an appropriate design of flexible working hours should be developed in order to minimize any impairing effects on health and psychosocial well-being; these recommendations should include - besides allowing for discretion in controlling one’s (flexible) working hours - that variability in flexible working hours should be kept low (or at least moderate), even if this variability is self-controlled.
Doc 445 : New networked technologies and carers of people with dementia : an interview study
Dementia is one of the greatest contemporary health and social care challenges, and novel approaches to the care of its sufferers are needed. New information and communication technologies (ICT) have the potential to assist those caring for people with dementia, through access to networked information and support, tracking and surveillance. This article reports the views about such new technologies of 34 carers of people with dementia. We also held a group discussion with nine carers for respondent validation. The carers’ actual use of new ICT was limited, although they thought a gradual increase in the use of networked technology in dementia care was inevitable but would bypass some carers who saw themselves as too old. Carers expressed a general enthusiasm for the benefits of ICT, but usually not for themselves, and they identified several key challenges including: establishing an appropriate balance between, on the one hand, privacy and autonomy and, on the other: maximising safety; establishing responsibility for and ownership of the equipment and who bears the costs; the possibility that technological help would mean a loss of valued personal contact; and the possibility that technology would substitute for existing services rather than be complementary. For carers and dementia sufferers to be supported, the expanding use of these technologies should be accompanied by intensive debate of the associated issues.
Doc 459 : How and why do people with depression access and utilize online drug information: a qualitative study.
Abstract Background People with depression commonly use the Internet to access antidepressant information, but the quality of this information is highly variable. The objective of this study was to assess how and why people use the Internet to access antidepressant information, and the self-reported impact of information obtained online. Methods Six focus groups were conducted with a cross-section of Internet users ( n = 29) with depression. Focus group transcripts were thematically content analyzed using a constant comparison approach. Results Reasons cited for seeking online information included to obtain a second opinion, to verify information provided in the Package Information Leaflet, to prepare to visit to a physician, and to learn about peer experiences. The Internet was used to complement rather than replace information provided by health professionals. The self-reported impacts of utilizing online drug information included increased autonomy, improved knowledge, being reassured, deciding to change a dose, to discontinue a drug and to suggest a new drug to a physician. Limitations Additional quantitative research and a random sampling technique would be required to obtain generalizable results and to assess the relative importance of the various reasons cited by the focus group participants. Conclusions The Internet was perceived as an important source of additional drug information, particularly when fear of stigmatization or depression related symptoms limited information seeking from other sources. Health professionals should design online services and direct their clients to accurate and reliable sources of online drug information.
Doc 467 : Living wills in the nursing profession: knowledge and barriers
The aims of this study were to understand Spanish nurses’ knowledge about living wills and legal regulations and to explore their experiences, needs and challenges in these situations using quantitative and qualitative approaches. The first part of the study was a descriptive survey administered to a convenience sample of nurses (454 individuals) who worked in hospitals and other primary care clinics in the Principality of Asturias in northern Spain. The survey tested their knowledge of living wills and related major legal issues. At the end of the survey, the nurses were asked to provide a personal email address if they were interested in participating in a personal interview. In the second part of this study, we used a qualitative phenomenological approach based on Husserl’s framework. The results indicate that nurses are not sufficiently knowledgeable about the use of LWD in clinical practise. As a consequence, they are unable to support patient autonomy in health care treatment decisions.
Doc 491 : Integrating mobile-phone based assessment for psychosis into people’s everyday lives and clinical care: a qualitative study
https://doi.org/10.1186/1471-244x-13-34 Jasper Palmier-Claus Anne Rogers John Ainsworth Matt Machin Christine Barrowclough Louise Laverty Emma Barkus Shitij Kapur Til Wykes Shôn Lewis
Over the past decade policy makers have emphasised the importance of healthcare technology in the management of long-term conditions. Mobile-phone based assessment may be one method of facilitating clinically- and cost-effective intervention, and increasing the autonomy and independence of service users. Recently, text-message and smartphone interfaces have been developed for the real-time assessment of symptoms in individuals with schizophrenia. Little is currently understood about patients’ perceptions of these systems, and how they might be implemented into their everyday routine and clinical care.
Doc 493 : Using IT for Non-Hierarchical Performance Assessment: New Ways to Develop Professionals in Health Care
The aim of this article is to describe how technological innovations are being used to address the specific challenges of assessing health care professionals’ performance and to discuss the theoretical implications of these innovations for human resources management. Performance management is specifically challenging for organizations employing skilled professionals, such as physicians, due to the complexity in defining performance and to the autonomy that professionals enjoy. Professionalism of employees implies that supervisors cannot evaluate adequately their subordinates’ performance and, thus, alternative assessment systems are necessary. This explains why in health care schemes such as 360-degree feedback and peer review are increasingly used. We define these alternative assessment systems as “non-hierarchical performance assessment” and report exploratory data from an Internet search of performance assessment Information Technology (IT) solutions offered by IT providers. We use a classification of these IT solutions in order to identify and discuss new ways for assessing and for developing professionals in health care. We conclude by discussing differences and similarities between 360-degree feedback and peer review and by identifying current trends and possible future developments about how IT enables new assessment systems in this industry.
Doc 497 : How Consumerist Do People Want to Be? Preferred Role in Decision-Making of Individuals with HIV/AIDS
What role do patients want to play in treatment decision-making? The new physician–patient relationship is popularly characterized in the language of consumerism; some speak of the “new patients,” armed with reams of Internet printouts, telling their doctors how they wish to be treated (Eysenbach and Jadad 2001; Haugh 1999). This emphasis is supported by medical ethics, which has long stressed respecting patient autonomy (Beauchamp and Childress 2001; Katz 1984; President’s Commission 1982); by legal standards requiring informed consent (Caulfield 2004; Etchells et al. 1996; Rozovsky 1997); and by the consumer movement, which encourages patient empowerment, medical consumerism and informed choice (Epstein 1996; Haug and Lavin 1983; Lupton 1997; Williamson 1992; Wood 2000). However, many providers continue to argue that this portrait does not depict the patients they see, that consumerist expectations are unrealistic and that their patients do not wish to be autonomous decision-makers.
A growing body of literature on shared decision-making (Charles et al. 1997; Coulter 2002; Coulter and Rozansky 2004; Deyo 2001; Frosch and Kaplan 1999; Kaplan 1999; McNutt 2004; Sevdalis and Harvey 2006) emphasizes the importance of partnership between providers and patients. Deber and colleagues (Deber 1994; Deber and Baumann 1992; Deber et al. 1996) further defined “preferred” role by distinguishing between two dimensions of “participation,” which they termed “problem-solving” (PS) and “decision-making” (DM). PS tasks have “right” and “wrong” answers, determination of which often requires expertise, whereas DM tasks incorporate both factual knowledge and individual preferences. These authors’ research confirmed that few care recipients in the populations they studied wished to assume responsibility for PS, although many did wish involvement in DM (Deber and Sharpe 1999; Deber et al. 1996; Kraetschmer et al. 2004; Stewart et al. 2001; Deber et al. 2007).
We accordingly surveyed people living with HIV/AIDS (PHAs), a population widely believed to be both highly knowledgeable about their disease and more actively involved in making treatment decisions (Epstein 1996; Furin 1997) and hence relatively likely to wish to assume an autonomous role. Indeed, in the early days of the epidemic, researchers found that many PHAs distrusted organized medicine. These attitudes were said to be fuelled by a combination of radical AIDS activism, reactions to perceptions of homophobia among healthcare providers (Douglas et al. 1985; Epstein 1996; O’Hare et al. 1996) and recognition of the limited ability of the medical establishment to deal effectively with this new disease (Epstein 1996). Consequently, many PHAs became experts in the disease and its treatment, attending conferences, presenting to peers, participating on pharmaceutical, government, policy and research advisory boards, and institutionalizing these efforts through AIDS service organizations (ASOs) (Kayal 1993).
This history suggests that PHAs are more likely than most care recipients to have relatively strong consumerist tendencies related to making their own healthcare choices. We asked PHAs about their preferences for involvement in treatment decision-making, their level of satisfaction with their current role in treatment decision-making, their trust in organized medicine and their use and views of a series of potential information sources.
Doc 508 : Prioritization among ethical issues of dental practice in Iran. A modified nominal group study
This study was designed in order to generate a priority list of dentistperceived important ethical issues in dental practice in Iran. A two-stage modified nominal group study was conducted. At first, the main ques tion of the study was presented to 24 dental specialists through direct interview (16) or e-mail (8, response rate was 75%). After analyzing the interview transcripts and email responses, a list of issues was extracted. The list was presented to a nominal group of 10 dental specialists to prioritize ethical issues according to their frequency and ethical signifi cance. Each participant selected and ranked the five most important is sues and then, the sum of ranks for each issue was calculated. The first stage of the study resulted in a list of 26 ethical issues. After grouping and combining related items, the list was condensed into 18 issues. The nominal group session resulted in a prioritised list. The first six issues of the list included: performing procedures without adequate competency, not taking responsibility for one’s errors, over-treatment (or unnecessary treatment), inappropriate manners towards patients, unprofessional discussion of a colleague’s work, and unprincipled behaviors towards disadvantaged patients. Conclusions: The results suggest that the problems occurring in the therapeutic relationship between dentists and their patients are the major ethical issues of dentistry in Iran. Issues such as respecting patient’s autonomy, confidentiality, taking informed consent, third-party issues, and dentists’ duties toward society don’t seem to be considered of high priority by dentists in Iran as a developing country.
Doc 526 : From conception to evaluation of mobile services for people with head injury: A participatory design perspective
Adults with cognitive impairments lack the means to organise their daily life, plan their appointments, cope with fatigue, and manage their budget. They manifest interest in using new technologies to be part of society. Unfortunately, the applications offered on smart phones are often beyond their cognitive abilities. The goal of this study was to design a mobile cognitive assistant to enhance autonomy of people living with acquired traumatic brain injury. Participatory design methodologies guided this research by involving adults with cognitive impairments (CI) and their caregivers in the early stages of the design process. The population of the study is composed of four male adults who present cognitive impairments (three with head injury and one with stroke) and three caregivers. The first phase of this research was to design the Services Assistance Mobile and Intelligent (SAMI) application based on the needs expressed by the participants. During three focus groups, needs emerged concerning planning, health monitoring and money management and led to the implementation of assistive solutions on an Android mobile phone. During the second phase, the participants evaluated the mobile assistant SAMI at home for eight weeks. The results demonstrate that the participants were able to participate actively in the conception of SAMI and to use it successfully. People with CI showed a slight improvement in their life satisfaction. Due to the small number of participants, these promising results need to be confirmed by a larger-scale study.
Doc 536 : Healthy Aging Reports: A Conceptual and Ethical Analysis of Vulnerability and Independency
1African Diaspora Healthcare Ethics Center, Rotterdam, Netherlands
Francis C. Agu Email: agufch{at}gmail.com
Two separate reports from the Dutch Health Council of Netherlands and Social and Cultural Planning Bureau draw our attention to the tension between certain factors specifically related to healthy aging, namely, vulnerability and independency/functioning independently. Though appearing contradictory, both concepts are very relevant in the elderly health care. Hence, the objective was to develop a conceptual and ethical analysis of vulnerability and independency. To achieve that, we conducted a conceptual analysis of more than 80 scientific and philosophical data collected from Pubmed, Google Scholar, and Web of Science. Both concepts are mostly defined as separate compartments, thereby missing their intrinsic relationship. For an ethically well-argued analysis of care for the elderly, we present two new definitions in which the concept of dignity provides a fundamental basis of understanding both concepts, which are indeed two human conditions. Furthermore, we underline the implications of the new conceptualization for autonomy, and give some examples of humanly respectful empowerment strategies in the elderly care.
Doc 567 : E-health: a health promotion tool for brazilian Amazon region
Objective: This study aimed to describe the e-health activities of Project USP in Rondonia to promote health into the Amazonian Brazilian State Rondonia in different types of educational resources. Methods: Population of Monte Negro county was reached by the e-health promotion activities including tele-education for community health workers, teachers and local health professionals with the videoconferencing, CD-ROM development and Cybertutor technologies. The population reached was calculated by the reach of these professionals into their daily activities. Results: The e-health activities held by Project USP in Rondonia are reaching local stakeholders to expand the spread of health knowledge within a region with severe difficulties of access to information and health care. These stakeholders, mainly working locally in the educational and auxiliary health professions, are seizing their opportunity to provoke autonomy in the population they work with, disseminating information among children in public schools and health care, possibly reaching more than 1,380 families. Conclusion: E-health activities showed to be important tool for health promotion to Amazonian communities. People living in regions with difficult access to many social needs, such as riverside communities, must be respected as citizens and thus their right to health must be ensured, which is provided in the Brazilian constitution, and it should be promoted through education, prevention and adequate health services.
Doc 575 : Transforming Scientific Inquiry: Tapping Into Digital Data by Building a Culture of Transparency and Consent.
With over 1.7 billion individuals engaged in social media, patients and consumers share more about their lives than ever before through wearable devices, smartphone applications, and social media outlets. This cornucopia of data offers significant opportunity for health researchers and clinicians to track and explore how digital presence contributes to patients’ health outcomes and use of health care resources. While patients readily share their information with online communities, it is imperative that they maintain a sense of autonomy over who has access to such data. Recent data breaches of major insurance companies and retailers illustrate the challenges and vulnerabilities related to information safety and privacy. Many Web sites and mobile apps require users to agree to data policies, but how those data are mined, protected, used, and externally shared is frequently nontransparent, resulting in a climate of fear and distrust around all forums of digital information sharing. Although such skepticism is perhaps justified, it should not deter health researchers from attempting to collect and analyze these novel data for the purpose of designing unique health interventions. By clarifying intent around digital data acquisition, simplifying consent procedures, and affirming a commitment to privacy, the authors contend that health researchers can partner with patients to transform the boundaries of scientific inquiry.
Doc 611 : The next decade of dialogue-Religion and health.
Mary Hemingway Rees died in 1954, some time before many of us here had the opportunity to know her, or the World Federation for Mental Health. Those of us who did not know her are so much the poorer. There is always too little of courage and autonomy, grace and tranquility in this present world, qualities that Mrs. Rees possessed and was possessed by. In these two decades since her death, our world has become quite unlike the world she knew. Still those qualities of life she achieved are the same each of us would strive for. Her personality and career being what they were, the choice of subject for these memorial lectures is especially appropriate: values in mental health. However, there is no way, given what has happened in psychology and in religious affairs, for that subject to be approached in a fashion similar to the first lecture given by Dr. Henry Dicks. For example, it was just two years before Mary Rees’s death that I had my first training experience in a mental hospital, and I recall sitting in general case conferences with all of us attempting to get acquainted with and accustomed to the most recent change in nomenclature for behavioral syndromes. What was new then has now been replaced more than once. This was all before the era of the Esalen Institutes, Carl Rogers’s second phase, humanistic psychology, Ida Rolf, sensitivity training, the Primal Scream, Gestalt therapy, behavior modifica tion, and, of course, transactional analysis, to say nothing of the revolution by the psychatropic chemicals and the broad use of hallucinogenic drugs. In this same period, on the spiritual side, the Reverend Mr. Robinson helped us see that God is dead in his book Honest to God. The churches came to be characterized as museums of man’s past, and deluded, experience. Spiritual truth came to us in the West from the East, the flower children appeared on the scene with transcendental meditation, and the worldwide revolution of youth thrust us into a paroxysm of protest
Introduction Recruitment of young doctors into psychiatry is declining in many countries, which might become a threat to the survival of the profession. Objectives To identify potential reasons for this threat. Aims To look at psychiatry with concepts used by the sociology of professions. Methods Professions are characterized – and these concept will be used for analysis here – by (1) ownership of a specialized body of knowledge and skills, which defines the field of competence and the scope of potential clients, including the demarcation from other professions; (2) holding a high status in society; (3) being granted autonomy by society, e.g. in recruiting and excluding members; and (4) being obliged, in return for the above, to guarantee high quality standards in providing services and following ethical rules. Results Six intertwined areas of concern are identified: three of them, the increasing criticism by users and carers, the intrusion of other professions, and psychiatry’s negative image in society, can be traced back to problems with the other three concerning the “ownership of a specialized body of knowledge and skills”. With the preparation and advent of DSM-5, discussions about the lack of validity of psychiatric disease entities have gone viral in the time of the internet. The attempts to “carve nature at its joints” have failed, and this is more and more perceived from outside, threatening psychiatry’s status in society and potentially turning away to be psychiatrists. Conclusion Looking at psychiatry as a profession may help to better understand its current situation.
Doc 689 : A Self-Determination Perspective on Online Health Information Seeking: The Internet vs. Face-to-Face Office Visits With Physicians
This study elucidates the experiential and motivational aspects of online health information beyond the theoretically limited instrumental perspective that dominates the extant literature. Based on a sample of 993 online health information seekers in India, the survey found that online health information seeking offers individuals greater autonomy, competence, and relatedness compared to face-to-face office visits with physicians. According to self-determination theory, individuals are motivated to act by a sense of volition and experience of willingness, validation of one’s skills and competencies, and feeling of connection with others who shaped one’s decisions. These 3 psychological needs, which motivate individuals to pursue what they innately seek as human beings, help explain why individuals turn online for health information. T tests showed that all 3 self-determination theory constructs -autonomy, competence, and relatedness-were higher for online health information seeking than for face-to-face office visits with physicians. A regression analysis found that 2 variables, autonomy and relatedness, explained online health information seeking. Competence was not a significant factor, likely because of competency issues faced by individuals in interpreting, understanding, and making use of online health information. The findings, which do not suggest that online health information seeking would displace physicians as many have feared, offer promise for an integrated system of care. Office visits with physicians would necessarily evolve into an expanded communicative space of health information seeking instead of an alternative channel for health information.
Nursing patients during labor and delivery is a demanding and challenging experience. There are many things nurses must learn in order to do this; they learn to make specific observations about the progress of labor, and the well-being of mother and infant, they learn specific activities which provide comfort to the mother, they teach and reinforce earlier knowledge about the birth process, breathing and relaxation techniques, and so on. One kind of nursing skill, needed in many areas in which nurses function, may be developed particularily well in this area. This is the minute-by-minute assessment of the patient’s state, and adaptation of nursing care to this. A surgical patient may move from self-sufficient independence, to helplessness, to gradually regained autonomy over a period of days or weeks. The obstetrical patient may pass through these stages in a matter of hours. Thus the nurse must operate on the basis of the patient’s behavior, as she sees it, at any point in time; she cannot make a plan of care and follow it for a long period. Rather, she has certain objectives relating to safety, well-being, comfort, physiological stability and so on, but she must continually make adaptations in ways of trying to attain these. Picture a hypothetical patient who arrives in the labor room in early labor. She is full of energy, talkative, happy. She is aware of what is going on in her body, and interested in observing her own progress. She times her own contractions, chats with her husband and the nurses, perhaps knits, walks about, telephones friends. She has
Doc 693 : [Information seeking on the internet: what information are pregnant women seeking?].
In the literature, uses of the internet by patients are interpreted either as a resource supporting their autonomy, or as a source of perturbation in the doctor-patient relationship. Analysing 50 interviews with pregnant women, this article aims at describing the different uses made during pregnancy. Some women mostly aim at sharing their experience in their use of internet. Others are looking for specialised information, by curiosity, to complement the information received in medical visits or, more rarely, as a result of a lack of information in their exchanges with professionals. Uses of internet by patients will develop in the future and it is important that professionals take into account these different forms of internet use in their practices.
Doc 697 : The Conceptual Design of a Mechatronic System to Handle Bedridden Elderly Individuals
The ever-growing percentage of elderly people in developed countries have made Ambient Assisted Living (AAL) solutions an important subject to be explored and developed. The increase in geriatric care requests are overburdening specialized institutions that cannot cope with the demand for support. Patients are forced to have to remain at their homes encumbering the spouse or close family members with the caregiver role. This caregiver is not always physically and technically apt to assist the bedridden person with his/her meals and hygiene/bath routine. Consequently, a solution to assist caregivers in these tasks is of the utmost importance. This paper presents an approach for supporting caregivers when moving and repositioning Bedridden Elderly Peoples (BEPs) in home settings by means of a mechatronic system inspired by industrial conveyers. The proposed solution is able to insert itself underneath the patient, due to its low-profile structural properties, and retrieve and reallocate him/her. Ideally, the proposed mechatronic system aims to promote autonomy by reducing handling complexity, alter the role of the caregiver from physically handler of the BEP to an operator/supervisor role, and lessen the amount of effort expended by caregivers and BEPs alike.
Doc 704 : P-68 Concerned about care: Disposing until the end of life… gender specific ideas about autonomy, responsibility, and vulnerability
Background A living will allows patients to express their own wishes for treatment in advance and make them legally mandatory for physicians’ as well as relatives’ care. Conceptions of autonomy, vulnerability, responsibility, and care as well as corresponding personal experiences build the background of such anticipative decision-making. Aim From May 2015 on the project, as a part of the interdisciplinary Bavarian research group ForGenderCare, will study the role of gender-specific beliefs and perceptions of autonomy, responsibility and vulnerability in anticipative decision-making in the final phase of life. Taking the German debate about living wills as an example, the project aims at exposing and comparing patterns of argumentation in the medico-ethical professional literature, advice literature and the media, among professional advisors and the population in Bavaria. The poster will present the project outline including hypotheses and preliminary results. Methods Debates on living wills take place at different levels. Therefore, platform-adapted methodologies have to be developed including desk analysis, qualitative interviews with professionals, group discussions with families, standardised content analyses of mass media, and qualitative content analyses of relevant online platforms. Relevance and practical aim The project will develop personalised counselling-models for planning living wills. Discussion As human existence oscillates between autonomy and dependence, we analyse four public and private areas that contribute to the current discussions in different ways: a) within the academia, b) in hospitals, c) in families, d) in mass media and also in specialised internet platforms. This holistic approach allows a deeper understanding of the debates on living wills in times of medicalization of life.
Doc 705 : The American healthcare “system” in 2005–part 6: how to grade the current system and proposed reforms.
If we had an ideal healthcare system, how would we know that it was ideal? Nothing pleases everyone. No one lives forever. No person is perfect; nor would a reformed healthcare system be perfect. What is as good as we can reasonably expect? During an earlier phase of this long debate, I determined that there were 11 key elements to use to judge a health system and that they could be equally weighted on a 1- to 9-point scale, with 9 points at the top.1 So, a nearly perfect system would total 11 times 9, or 99. The 11 characteristics were the following: Does the health system provide access for all to basic care? Does it produce real cost control? Does it promote continuing quality, reduce administrative hassle and cost, enhance disease prevention, encourage primary care, consider long-term care, retain necessary patient and physician autonomy, limit professional liability, and possess staying power? Some 10 years ago when I graded the various reforms then being proposed, the US system graded at 55; the Clinton Plan graded at 70; the Stark Congressional markup of it got the top score at 72; the Republican leadership plan graded at 47.[2] Of course, no organized reform occurred and things just got worse. I grade the 2005 American system at 52. I give the “Medicare for All” plan that I recently suggested a grade of 73 and the “Kaiser Permanente America” concoction a 76.[3] Next time, my proposed reforms. That’s my opinion. I’m Dr. George Lundberg, Editor of MedGenMed.
Readers are encouraged to respond for the editor’s eye only or for consideration for publication via email: ten.epacsdem@grebdnulg. Please include the title of the Webcast Video Editorial that you are responding to in the subject line of your email.
Doc 706 : Cyberchondria: emerging themes for children’s nurses in the internet age.
In many countries, anxious adults and young people are increasingly searching the web for information about their health or ill health and that of their family. This activity often increases their anxiety and confusion. Cyberchondria refers to the resulting match with real or imagined symptoms, and may lead to unnecessary medical consultation. Advantages of online searching include knowledge, empowerment, autonomy and self-responsibility. Disadvantages are increased fears and possible misinformation and misdiagnosis and inappropriate self-treatment. There is also loss of placebo-style trust in, and concordance with, professionals, who may experience reduced confidence, authority and effectiveness. However, a new and more collaborative style of consultation has developed, with the practitioner confirming or refuting information rather than protecting it.
Doc 724 : Autonomy and Human Dignity Are Key Features of a Good Death in Finnish Nurses’ Conceptions: A Phenomenographic Study
In Europe, most individuals die in hospitals or other health care institutions, where nurses care for them at the end of their lives. Despite the nurses’ important role in end-of-life care, their perceptions of death are underrepresented in the literature. This study explores Finnish nurses’ varied conceptions of a good death with a qualitative design. Nurses (n = 82), recruited via social media, completed a Web-based questionnaire about a good death. Data were collected in April 2014 and analyzed inductively with a phenomenographic, 7-step analysis method. The autonomy and human dignity of the dying person were highlighted in the study results as key features of a good death. Four categories of description emerged from the data: respect of one’s autonomy and human dignity, attributes of a good death, preparation for death, and contextual aspects of a good death. The findings demonstrate the broad variation in nurses’ conceptions of a good death. Nurses will be better able to provide individualized and high-quality end-of-life care with knowledge about the various existing conceptions of a good death. Future research should explore the extent to which nurses’ conceptions of a good death are realized during provision of end-of-life care by nurses in different health care settings.
Doc 776 : Professional self-employment, new power and the sharing economy: Some cautionary tales from Uber
This article reflects on some of the major changes in the ways that people are working today, changes often driven by a preference for greater autonomy and choice, but also to work on a sharing, collaborative or networked basis. Many of the growing numbers of independent professionals are attracted by these ways of working. Developments in Information and Communication Technology have been critical, especially in enabling services, including professional services, to be delivered via internet platforms. This has created, in effect, new forms of intermediation and increasingly complex work relationships. These developments have often proved very controversial, as instanced by the disputes surrounding Uber, the international, internet-based taxi provider. Many of these changes also raise issues of accountability and work quality, along with creating new patterns of work relationships. Inevitably, the changes also highlight the role of regulation, which is the main focus of this article The topic is explored against a backdrop of much recent deregulation, challenges to so-called ‘red tape’ and laissez faire policies. The myriad of disputes and litigation involving Uber is examined and reflected upon. There are, of course, many differences between the taxi drivers of Uber and the designers, journalists, engineers and consultants, typical of independent professional working, but there are also some key parallels and experiences that provide a cautionary tale!
Doc 785 : Managing ‘shades of grey’: a focus group study exploring community-dwellers’ views on advance care planning in older people
Community-dwelling consumers of healthcare are increasing, many aging with life-limiting conditions and deteriorating cognition. However, few have had advance care planning discussions or completed documentation to ensure future care preferences are acted upon. This study examines the awareness, attitudes, and experiences of advance care planning amongst older people and unrelated offspring/caregivers of older people residing in the community.Qualitative descriptive research, which included focus groups with older people (55+ years) and older people’s offspring/caregivers living in an Australian city and surrounding rural region. Data was analysed using an inductive and comparative approach. Sampling was both convenience and purposive. Participants responded to web-based, newsletter or email invitations from an agency, which aims to support healthcare consumers, a dementia support group, or community health centres in areas with high proportions of culturally and linguistically diverse community-dwellers.Eight focus groups were attended by a homogenous sample of 15 older people and 27 offspring/caregivers, with 43% born overseas. The overarching theme, ‘shades of grey’: struggles in transition, reflects challenges faced by older people and their offspring/caregivers as older people often erratically transition from independence and capacity to dependence and/or incapacity. Offspring/caregivers regularly struggled with older people’s fluctuating autonomy and dependency as older people endeavoured to remain at home, and with conceptualising “best times” to actualise advance care planning with substitute decision maker involvement. Advance care planning was supported and welcomed, x advance care planning literacy was evident. Difficulties planning for hypothetical health events and socio-cultural attitudes thwarting death-related discussions were emphasised. Occasional offspring/caregivers with previous substitute decision maker experience reported distress related to their decisions.Advance care planning programs traditionally assume participants are ‘planning ready’ to legally appoint a substitute decision maker (power of attorney) and record end-of-life treatment preferences in short time frames. This contrasts with how community dwelling older people and offspring/caregivers conceive future care decisions over time. Advance care planning programs need to include provision of information, which supports older people’s advance care planning understanding and management, and also supports offspring/caregivers’ development of strategies for broaching advance care planning with older people, and preparing for potential substitute decision maker roles. Development and integration of strategies to support older people’s decision-making when in the ‘grey zone’, with fluctuating cognitive capacities, needs further consideration. Findings support an advance care planning model with conversations occurring at key points across a person’s lifespan.
Doc 810 : Technology meets tradition: The perceived impact of the introduction of information and communication technology on ward rounds in the intensive care unit
Public policy in many health systems is currently dominated by the quest to find ways to ‘do more with less’-to achieve better outcomes at a reduced cost. The success or failure of initiatives in support of this quest are often understood in terms of an adversarial dynamic or struggle between the professional logics of medicine and of management. Here, we use the case of the introduction of information and communication technology (ICT) to a well-established ritual of medical autonomy (the medical ward round) to articulate a more nuanced explanation of how and why new ways of working with technology are accepted and adopted (or not).The study was conducted across four intensive care units (ICUs) in major teaching hospitals in Sydney, Australia. Using interviews, we examined 48 doctors’ perceptions of the impact of ICT on ward round practice. We applied the concept of institutional logics to frame our analysis. Interview transcripts were analysed using a hybrid of deductive and inductive thematic analysis.The doctors displayed a complex engagement with the technology that belies simplistic characterisations of medical rejection of managerial encroachment. In fact, they selectively welcomed into the ward round aspects of the technology which reinforced the doctor’s place in the healthcare hierarchy and which augmented their role as scientists. At the same time, they guarded against allowing managerial logic embedded in ICT to de-emphasise their embodied subjectivity in relation to the patient as a person rather than as a collection of parameters.ICT can force the disruption of some aspects of existing routines, even where these are long-established rituals. Resistance arose when the new technology did not fit with the ‘logic of care’. Incorporation of the logic of care into the design and customisation of clinical information systems is a challenge and potentially counterproductive, because it could attempt to apply a technological fix to what is essentially a social problem. However, there are significant opportunities to ensure that new technologies do not obstruct doctors’ roles as carers nor disrupt the embodied relationship they need to have with patients.
Doc 819 : A Research on the Medical Professionals’ Resistance of Telemedicine: Utilizing the Delphi Study
Background: The constructions of the infrastructure for information and communication technology (ICT) and a universal health insurance system are necessary for a smooth execution of telemedicine. However, despite the fulfilment of such necessary conditions, there are situations where the telemedicine still fails to settle as a system due to low receptivity of stakeholders.
Introduction: This study plans to first analyse the stakeholders’ resistance to an organisation’s implementation of telemedicine. By focusing on the medical professionals’ interests, we aim to propose a strategy to minimise their conflicts and improve their acceptance.
Materials and methods: The Delphi study was carried out on 190 telemedicine professionals, whom have been recommended by 480 telemedicine-related personnel in South Korea.
Results: Out of 190 professionals, 60% of enrolled participants completed the final questionnaires. The stakeholders were categorised into groups including policy making officials, medical professionals, patients and industrialists. Amongst these, the majority of the medical professionals opposed to the execution of telemedicine. The main causes of such opposition were found to be the lack of medical delivery system and the threat of disruption of the primary care units. The consensus amongst stakeholders revealed low and in order to facilitate the smooth agreements, each expert presented the similar conditions such as the financial support by the government and the guarantee of medical autonomy.
Conclusion: The analysis of the causes of the resistance of telemedicine, extracted from the concerned parties, has important implications for the policy-makers to derive strategies for an appropriate consensus.
Doc 820 : Improving the Health of HIV Seropositive Patients: SERONET, a New Tool for the Communitarian Approach
In developed countries, the lives of HIV seropositive patients have not been unaffected by the technological revolution initiated by internet. HIV seropositive patients use the Web as a tool for searching information, meeting other Web users and developing social networks. In July 2008, taking advantage of the advent of Web technology 2.0, AIDES, a non-profit organization dedicated to fighting AIDS, launched Seronet, a website premised on a communitarian objective that aims to improve access to knowledge, provide a forum for sharing individual experience of the disease and break the cycle of isolation. Despite certain limitations, a relatively wide support network has gradually developed around Seronet. The long-term impact of this network on isolation, the development of autonomy, and the encouragement of a communitarian involvement of HIV-positive patients in terms of healthcare will need to be assessed.
Doc 824 : Pharma Websites and “Professionals-Only” Information: The Implications for Patient Trust and Autonomy
Access to information is critical to a patient’s valid exercise of autonomy. One increasingly important source of medical information is the Internet. Individuals often turn to drug company (“pharma”) websites to look for drug information.The objective of this study was to determine whether there is information on pharma websites that is embargoed: Is there information that is hidden from the patient unless she attests to being a health care provider? We discuss the implications of our findings for health care ethics.We reviewed a convenience sample of 40 pharma websites for “professionals-only” areas and determined whether access to those areas was restricted, requiring attestation that the user is a health care professional in the United States.Of the 40 websites reviewed, 38 had information that was labeled for health care professionals-only. Of these, 24 required the user to certify their status as a health care provider before they were able to access this “hidden” information.Many pharma websites include information in a “professionals-only” section. Of these, the majority require attestation that the user is a health care professional before they can access the information. This leaves patients with two bad choices: (1) not accessing the information or (2) lying about being a health care professional. Both of these outcomes are unacceptable. In the first instance, the patient’s access to information is limited, potentially impairing their health and their ability to make reasonable and well-informed decisions. In the second instance, they may be induced to lie in a medical setting. “Teaching” patients to lie may have adverse consequences for the provider-patient relationship.
Doc 860 : «Практика заботы» Луиджины Мортари как социологический паззл
Anton Smol’kin – Kandidat Nauk (PhD) in Sociology, chair of department of humanities, RANEPA; research fellow, MSSES, Moscow, Russian Federation. Email: anton.smolkin@gmail.com This review is dedicated to a critical analysis of the Italian philosopher’s Luigina Mortari concept of care. Mortari develops Heidegger’s ideas on caring as a fundamental component of human existence. This plot can act as a significant resource to explain the social, given the unprecedented scope of the necessary care for people as a biological species about each other, from maternal attention to the division of labour. According Mortari, care means satisfying those needs of the Other, who is unable to satisfy on their own. In other words this is a service, while real care can only be the satisfaction of vital needs. For a long time care as an independent concept was on the periphery of research interests and preference was given to the notion of autonomy, which was seen as more ideologically attractive. However, a person spends only part of their life in a state of autonomy, and during this autonomous period he or she usually acts as a source of care. Mortari criticises the liberal view of autonomy as a goal and key value rather than one stage of life. This opens the possibility to understand the unavailability of full autonomy, except at the cost of destroying the social. However, criticism of the liberal model of autonomy can have undesirable political consequences, such as becoming an excuse for paternalism and totalitarianism. Mortari sees an additional complexity in the informal nature of caring for the Other because of the fundamental unknowability of the latter. This imposes a radical responsibility on the caregiver. For example, being a good nurse does not mean acting strictly according to job descriptions; the necessary competencies are developed in practice due to the rethinking of cases. Mortari argues that care is devalued and is not rewarded adequately not only because it is mainly women engaged in it, but also because of the role played by care unmeasurability and informality. Idealising care as an endearing and giving action and in the criticism of Moss’s concept of gift, Mortari ignores the function of the gift in assembling the social.
Doc 863 : Physician Autonomy and the Paradox of Rationalization: Clinical Pathways in China’s Public Hospitals
Tools meant to standardize and rationalize clinical practice have been widely used in healthcare institutions. One tool in particular, clinical pathways, has been a key component of the recent public hospital reform in China. Clinical pathways regulate how the core activities of the medical professional should be performed. Examining pathway implementation and physicians’ attitude toward them may shed light on the extent of discretion and autonomy physicians have in their core activities. Therefore, this study takes clinical pathways as a lens through which to study Chinese physicians’ work and autonomy and asks three questions: First, what is the attitude of physicians toward clinical pathways? Second, how are pathways implemented in physicians’ practice? And third, what are the determinants of physicians’ attitude? Both quantitative and qualitative data are used to explore the research questions. The quantitative data come from a survey of 158 physicians in three tertiary hospitals in two provincial capitals. The qualitative data are from all online discussions about clinical pathways on one of the most popular social networking websites for physicians and hospital administrators. The findings are consistent with the prediction based on sociological theorization of rationalization in professional work. Namely, there are two distinct dimensions in physicians’ attitude toward clinical pathways: physicians felt that pathways made their practice more scientific, but they also felt that the pathways were burdensome and restrictive. Physicians were in general heavily involved in the process of pathway implementation, and restrictive monitoring and sanctioning practices were relatively uncommon. Factors associated with pathway implementation were important predictors of physicians’ attitude, whereas professional orientation and concerns with the status of the profession had limited effect. Taken together, the findings from this exploratory study suggest that although physicians in China9s public hospitals are dependent on their organizations, they retain considerable discretion in the implementation and use of clinical pathways. On the other hand, physicians’ views of clinical pathways are more prominently shaped by organizational factors than by their professional orientation.
Doc 867 : Dr. Google and Premature Consent: Patients Who Trust the Internet More Than They Trust Their Provider
A growing number of patients make up their minds about some medical issue before they see their provider, either by googling their symptoms or asking a friend. They’ve made up their minds before coming in, and they resist their provider’s recommendations even after receiving information and advice from their provider. This is a new kind of medical autonomy problem; it differs from cases of standard consent, futility, or conscientious refusal. Providers sometimes call this problem “Dr. Google.” I call it premature consent. Providers may wonder whether these patient decisions command the same deference and respect as other patient decisions. The answer is “no,” for these patients are neither fully competent nor properly informed. They typically appear to be competent, but competence includes the ability to deliberate, and they are not deliberating well when they make up their minds before consulting a qualified provider. They seem informed, especially after talking to their provider, but they are misinformed about what sources of medical advice to trust. Moreover, being informed requires believing the information one has received, and these patients sometimes don’t believe the information their provider gives them.
Doc 868 : Seeking Health Information on Social Media
In the past few years, social media has changed the ways that health seekers seek health information. However, despite the tremendous growth of social media applications in the health-care industry, trust is still among the biggest challenges for social media health services in gaining greater acceptance. Drawn from previous literature on self-determination theory, social support, and trust, this study investigates people’s intentions to seek health-information on social media. The authors carefully selected a sample from Italy with subjects who already had experience in seeking health information on social media. The empirical results show that informational support, emotional support, and the satisfaction of people’s autonomy and relatedness needs play an important role through trust in influencing people’s health-information-seeking intentions on social media. This study is among the first to adopt the theories of self-determination, social support, and trust to investigate people’s intentions to seek health information on social media.
Doc 869 : Effect of Doctor’s Personality, Job Characteristic, Payment Method, Facility, on Performance and Quality of Doctor Service
Background: Doctors generally do not work permanently at hospitals. Doctors are expected to deliver quality medical service at the hospitals. However, hospitals often find it difficult to exercise efective managerial control over the quality of medical services. This study aimed to investigate the effect of doctor’s personality, job characteristic, payment method, facility, on performance and quality of doctor service. Subjects and Method: This was an analytic observational study using cross-sectional design. The study was carried out at Dr. Moewardi Hospital and PKU Muhammadiyah Hospital, Surakarta, from March to May 2017. A sample 182 study subjects consisting of 26 doctors, 26 nurses, and 130 patients, were selected for this study by simple random sampling. The dependent variable was quality of doctor service. The independent variables were doctor’s personality (extrovert vs. introvert), doctor’s carefulness, proactive attitude, self-efficacy, autonomy, performance feedback, supervisor support, payment method, work site (private vs. public), and performance. Questionnaire was used to collect data. Path analysis was employed to analyze the data. Results : Good quality of doctor service was directly affected by good performance (b=0.64, SE=0.11, p<0.001), private work site (b= 2.85, SE=0.66, p<0.001), and strong self-efficacy (b=0.21, SE=0.07, p=0.006). Good work performance was affected by extrovert personality (b=0.08, SE= 0.06, p=0.186), careful attitude (b=0.30; SE=0.09; p=0.001), proactive personality (b=−0.17; SE=0.05; p=0.001), strong self-efficacy (b=0.27; SE=0.07; p<0.001), autonomy (b=0.16; SE=0.06; p=0.015), performance feedback (b=0.43; SE=0.13, p<0.001), supervisor support (b=0.14, SE=0.06, p=0.018), payment method (INA CBGs) (b= −2.29; SE= 0.66; p<0.001), and private work site (b= -0.26, SE= 0.68, p=0.696). Conclusion: Good quality of doctor service is directly affected by good performance, private work site, and strong self-efficacy. Keywords : quality, doctor’s service, performance, path analysis Correspondence: Heni Hastuti. Masters Program in Public Health, Sebelas Maret University, Surakarta. Email: henihastuti.1988@gmail.com Mobile: +6281904534310. The Journal of Health Policy and Management (2017), 2(1): 42-55 https://doi.org/10.26911/thejhpm.2017.02.01.04
Doc 908 : The implementation of the Internet of Things: What impact on organizations?
Abstract Health is one of the growing sectors. Expenditure growth on average is about 2.5% a year (OECD, 2015) most notably led by the impact of ageing population. One of the areas with the fastest growth due to the “ageing-boom” is that the senior care. Technology investment is necessary to cope with the surge of patients. Internet of Things is one of those solutions. Too few studies have analyzed the organizational impact of these technologies. We propose a model confounding organizational perspective and anthropology. We seek to understand how the diversity of technological tools can give meaning to their implementation in the organization. Based on experts’ statements and analysing weak signals, we suggest three trends: the Internet of Things strengthens patients’ autonomy; it fights against the negative image of Senior care and ensures continuity between homecare services and institutionalization. The Internet of Things strengthens the bureaucratic aspect of Senior care, which in certain respects sound like highly bureaucratic organization where control becomes dominant. The duty of monitoring, control and transparency is enhanced by disempowering professionals and changing the tasks of Senior care directors whose supervisory task has grown major. The Internet of Things can strengthen an opposite organizational model based on technical and human networks.
Doc 930 : Identifying autonomy-supportive message frames in online health communication
Background To date, scholars have mainly focused on tailoring the content of online health communication, yet effect sizes remain small. To increase its public health impact, testing strategies that might increase the effectiveness of online computer-tailoring is a priority. The aim of this study is to explore the potential of message frame tailoring, by identifying the most autonomy-supportive message frame within an online health communication intervention aimed at the promotion of vegetable intake.
Methods Two strategies will be studied that have been found to increase perceived autonomy-support in the face-to-face setting, i.e. offering choice and using non-controlling language. A 2 (choice vs. no choice) x 2 (non- controlling vs. controlling language) experiment will be conducted. Participants (N=492) will be recruited via a research panel and will be randomly assigned to one of the conditions. Measurements will occur before (T0; demographics, present behaviour) and directly post-intervention (T1; perceived autonomy-support).
Expected results It is hypothesized that both offering choice and using non-controlling language increase perceived autonomy-support, but that the combination is most effective.
Current stage of work Currently, intervention materials have been adjusted for use in each of the four conditions. Next steps will entail pre-testing among experts and the target population, finalizing intervention materials and data collection (expected in April-May 2017).
Discussion The results from this study will contribute to the increased effectiveness of online computer-tailored health communication, a low-cost health behaviour change strategy. As the Internet ensures a great reach, this increased effectiveness will improve its impact on public health.
Doc 931 : Jonsen’s Four Topics Approach as a Framework for Clinical Ethics Consultation
This was an in-depth qualitative study that looked at the reasons patients were referred to the Clinical Ethics Committee (CEC) of an acute hospital in Singapore and explore how the CEC approached cases referred. Jonsen’s four topics approach was applied in the deliberative process for all cases. A comprehensive review of the case records of 28 patients referred consecutively to the CEC from 1 January 2012 to 31 December 2014 was conducted. Data and information was collated from the referral forms, patient medical records, and emails communicated among CEC members. A deductive approach to thematic analysis based on Jonsen’s four topics approach was used to analyze the documents. Majority of the patients were male (94%), Chinese (76%), and above 65 years of age (41%). Ethical dilemmas surfaced due to differences in opinion regarding withholding of aggressive management (53%), withdrawing treatment (35%), and ascertaining patient’s autonomy (12%). In most cases, the patients’ preference on end-of-life care was unknown (82%). The main reasons for referral to the CEC were conflicts in clinical management and uncertainty about the decision-making capacity of patients. The CEC members tended to emphasize on “patient preference” more than the other quadrants in the four topics approach as they worked through each case. The Jonsen’s four topics approach lays the groundwork to frame ethical dilemmas that can be easily applied in the clinical setting and is a useful tool for the CEC’s teaching and discussion. Nonetheless, the approach only organizes ethical dilemmas and requires clinicians to apply own judgment in weighing ethical principles. Further studies can look into adapting the four topics approach to suit the local practices and context.
Doc 941 : Искусственный интеллект в здравоохранении: системные проблемы
Health Care becomes the communication system within digital economy. This fact causes the extraordinary complexity in Health Care management. Artificial Intelligence technologies have a basic feature that is self-governing, autonomy in decision-making. Artificial Intelligence’s self-governing is a challenge at the population level, which requires to build the right digital architectonics. This issue concerns not only diagnostics and treatment of diseases, but also the accessibility of medical services for population. It is necessary to broader consider the role of Health Care in common economic structure of Internet of Things, and create an anthropocentric infrastructure, in which all types of digital transactions will be included in co-financing of Health Care. This measure wouldn’t allow to separate medical services from all segments of Internet of Things, otherwise Health Care financing would be critically cut. The multifunctional cards, such as the «Mir» card, is the first step towards digital integration. This card includes electronic access to medical services and prescriptions along with the ability to pay for travel on transport and other applications as the «Social Card of Moscow citizen».
Doc 962 : Should Artificial Intelligence Augment Medical Decision Making? The Case for an Autonomy Algorithm
A significant proportion of elderly and psychiatric patients do not have the capacity to make health care decisions. We suggest that machine learning technologies could be harnessed to integrate data mined from electronic health records (EHRs) and social media in order to estimate the confidence of the prediction that a patient would consent to a given treatment. We call this process, which takes data about patients as input and derives a confidence estimate for a particular patient’s predicted health care-related decision as an output, the autonomy algorithm. We suggest that the proposed algorithm would result in more accurate predictions than existing methods, which are resource intensive and consider only small patient cohorts. This algorithm could become a valuable tool in medical decision-making processes, augmenting the capacity of all people to make health care decisions in difficult situations.
Doc 964 : Freezing fertility or freezing false hope? A content analysis of social egg freezing in U.S. print media
In 2012, the American Society for Reproductive Medicine (ASRM) lifted the experimental label on oocyte preservation, but cautioned against women using it to avoid age-related infertility, known as social egg freezing (SEF). In 2014, Facebook and Apple announced that they would offer SEF as a workplace benefit. Within the context of a rapidly growing market for SEF, we were interested in how these two decisions affected media discussions, given that such discourse can strongly influence public perceptions and behaviors. We used a content analysis methodology to code 138 articles published in U.S. newspapers and magazines between 2012 and 2015. Focusing on a financial concern over the cost of SEF and the lack of insurance for SEF, we found that media portrayals of SEF pivot away from the ethical principle of nonmaleficence centered in the ASRM decision to discourage SEF. Instead, they highlight an issue of justice that can be remedied through the offer of SEF as a workplace benefit. Overall, media portrayals of SEF paint a simplistic and rosy picture that more options, especially more reproductive and economic options, automatically enhance women’s autonomy.
Doc 979 : Can digital health save democracy? Meeting the cosmopolitical challenge of digital worlds
This article explores the challenges and opportunities of social media health activisms to shape public participation in the digital future of healthcare. As health becomes ever more entangled with digital technologies, a growing ecology of digital health services promise greater individual autonomy to learn about and managing medical conditions, as well as accessing health services and engaging in forms of self-care. Cautioning against optimist visions of digital health and their promise of empowerment and autonomy, the article explores how health activisms on social media are reclaiming visions of healthcare that move beyond individual and depoliticised models of health technologies. The notion of cosmopolitics is employed to conceptualise relations between technology and health that implicate human and non-human interests in entanglements between health, morality and technology.
Doc 1018 : Professional autonomy and surveillance: the case of public reporting in cardiac surgery
Professional autonomy has come under greater scrutiny due to managerialism, consumerism, information and communication technologies (ICT), and the changing composition of professions themselves. This scrutiny is often portrayed as a tension between professional and managerial logics. Recently, medical autonomy has increasingly been shaped in terms of transparency, where publication of clinical performance (via ICT) might be a more pervasive form of surveillance. Such transparency may have the potential for a more explicit managerial logic but is contested by clinicians. This paper applies notions of surveillance to public reporting of cardiac surgery, involving the online publication of mortality rates of named surgeons. It draws on qualitative data from a case-study of cardiac surgeons in one hospital, incorporating interviews with health care managers and national policymakers in England. We examine how managerial logics are mediated by professional autonomy, generating patterns of enrolment, resistance and reactivity to public reporting. The managerial ‘gaze’ of public reporting is becoming widespread but the surgical specialty is accommodating it, leading to a re-assertion of knowledge, based on professional definitions. The paper assesses whether this form of surveillance is challenging to or being assimilated by the medical profession, thereby recasting the profession itself.
Doc 1059 : From Information Seekers to Innovators: Qualitative Analysis Describing Experiences of the Second Generation of E-Patients
Background Current health care systems are rarely designed to meet the needs of people living with chronic conditions. However, some patients and informal caregivers are not waiting for the health care system to redesign itself. These individuals are sometimes referred to as e-patients. The first generation of e-patients used the internet for finding information and for communicating with peers. Compared with the first generation, the second generation of e-patients collects their own health data and appears to be more innovative. Objective The aim of this study was to describe the second generation of e-patients through exploration of their active engagement in their self-care and health care. Methods Semistructured interviews were conducted with 10 patients with chronic conditions and 5 informal caregivers. They were all recruited through a Web-based advertisement. Data were analyzed according to the framework analysis approach, using the 3 concepts of the self-determination theory—autonomy, relatedness, and competence—at the outset. Results Study participants were actively engaged in influencing their self-care and the health care system to improve their own health, as well as the health of others. This occurred at different levels, such as using their own experience when giving presentations and lectures to health care professionals and medical students, working as professional peers in clinical settings, performing self-tracking, contributing with innovations, and being active on social media. When interaction with health care providers was perceived as being insufficient, the participants sought support through their peers, which showed strong relatedness. Competence increased through the use of technology and learning experiences with peers. Their autonomy was important but was sometimes described as involuntary and to give up was not an option for them. Conclusions Like the first generation of e-patients, the participants frequently searched for Web-based information. However, the second generation of e-patients also produce their own health data, which they learn from and share. They also engage in the innovation of digital tools to meet health-related needs. Utilizing technological developments comes naturally to the second generation of e-patients, even if the health care system is not prepared to support them under these new circumstances.
Doc 1072 : [Internet and mobile-assisted interventions in mental disorders : Implementation in Germany from an ethical perspective].
BACKGROUND Internet and mobile-based interventions (IMIs) for mental disorders are seen by some authors as a step forward to narrow the treatment gap in mental health; however, especially in Germany professionals voice ethical concerns against the implementation of IMIs. The fact that there is broad evidence in favor of IMIs and that IMIs have already been implemented in several countries requires an ethical analysis to answer these concerns. OBJECTIVE The objective is to tackle ethical issues connected to a possible implementation of IMIs for mental disorders in Germany and to point out possible solutions. MATERIAL AND METHODS We conducted an ethical analysis using the criteria of well-being of patients, non-maleficence, justice, and patient autonomy, based on the empirical evidence. RESULTS AND CONCLUSION The ethical analysis showed that IMIs for mental disorders principally have a positive effect on the well-being of patients and have a low risk of impairment. Additionally, IMIs can minimize risk, improve justice, and strengthen autonomy of mentally ill patients. Despite the broad evidence, there are still research desiderates with respect to ethical aspects, e. g. patient information for mentally ill patients.
Doc 1074 : Enabling Self-management of a Chronic Condition through Patient-centered Coaching: A Case of an mHealth Diabetes Prevention Program for Older Adults
Patient-centered communication (PCC) by healthcare professionals can contribute to enacting and facilitating patients’ self-management of chronic health conditions. This study investigates the emerging patterns of PCC that occur in an mHealth-based diabetes prevention program for older adults. The analysis of user-coach communication data during the 16-week period of the program revealed four PCC strategies employed by coaches: (a) triggering reflections on users’ routinized habits, (b) jointly determining a measurable health goal, (c) facilitating self-evaluations on recent behavior change, and (d) tailoring programs to adapt to users’ lifestyle and health status. To advance these strategies, coaches utilized various mHealth features that helped them (a) engage in data-driven coaching, (b) increase situational awareness of users’ health conditions and routines, (c) provide continuous support to users through regular and spontaneous in-app chats, and (d) foster user autonomy and engagement. The findings extend implications for developing technology-enabled healthcare practice to enhance self-management of chronic illness.
Doc 1106 : [Design and development of a new information technology platform for patients with dementia].
https://pubmed.ncbi.nlm.nih.gov/29307870/ Péter Osváth Viktor Vörös Attila Kovács Adrienn Boda-Jörg Szabolcs Fekete Réka Jankovics Tamás Tényi Sándor Fekete C.Ict Life
As dementia, including Alzheimer’s disease is a major public health issue worldwide, there are many efforts at European level to promote active and healthy ageing. University of Pecs joined the ICT4Life project - supported by the European Union H2020 programme - in 2016. The aim of this three-years project is to improve qualityof- life and autonomy of patients with mild or moderate dementia with developing a new Information and Communication Technology (ICT) platform, which may provide help for patients, caregivers and professionals.The ICT4Life research is conducted among patients with cognitive decline, their relatives, caregivers, and professionals involved in their care. The needs of the different actors are assessed with semi-structured interviews and clinical scales (cognitive and affective scales, quality-of-life measurements, functionality, caregiver burden), which help to develop a user-friendly, adaptive and personalized platform.Using the integrated ICT platform (bio-sensors, smart TV, tablet, mobile, bracelet) may contribute to monitor (physical, psycho-motor and emotional states) elderly with cognitive decline and to provide better and personalized care for them. The platform includes cognitive enhancement with gamification, and focuses also on the decrease of professional and caregiver burden.Here we report on the ICT4Life programme, which develops an ICT solution for individuals with early stage cognitive impairment while contributing in a user-friendly way to extending their independence and improve their quality-of-life.
Doc 1114 : Fuzzy logic system for human activity recognition
Fall detection for elderly and patient is a very important service that has the potential of increasing autonomy of elders while minimizing the risks of living alone. It has been an active research topic due to the fact that the health care industry has a big demand for products and technology of fall detection systems. Owing to the recent rapid advancement in sensing and wireless communication technologies, fall detection systems have become possible. They allow detecting fall events for the elderly, monitoring them, and consequently providing necessary help whenever needed. This paper describes the ongoing work of detecting falls in independent living senior apartments using force sensors and 3-axis accelerometers concealed under intelligent tiles. The force sensors permit detecting elders’ falls, locating, tracking and recognizing human activities (walking, standing, sitting, lying down, falling, and the transitions between them). However, the detection accuracy of real data contains false alarms coming from falling and lying postures. To solve this issue, we propose the fusion between the force sensor measurements and the accelerometer sensor decisions. As a consequence, the system accuracy is satisfactory and the results show that the proposed methods are efficient, and they can be easily used in a real elder tracking and fall detection system. The Internet-of-Things (IoT) has taken the business spectrum, and its applications vary widely from agriculture and health care to transportation. A hospital atmosphere is terribly nerve-wracking, particularly for senior voters and youngsters. With the ever-increasing world population, the standard patient-doctor appointment has lost its effectiveness. Hence, good health care becomes vital. good health care is enforced the least bit levels, ranging from temperature observation for babies to pursuit very important signs within the senior. The complexness and value of implementation vary supported the specified preciseness of the individual devices, functionalities, and class of the appliance that they’re used.
Doc 1118 : Four “Big” Stereotypes on Nurses in Mass Consciousness: on the Materials of the Moscow People Opinion Analysis in Social Media
Staffing problems (including staff shortage) in nursing reveal the connection with the stereotypical perception of the profession. The study of stereotypes was limited to Moscow healthcare and was based on downloading messages from social media (31,613 posts), the relevance of their study is determined by the growth of social media influence on public opinion. 24% of messages about nurses in the sample contain “large” stereotypical images (excluding spam). It was studied four “large” stereotypical images of a nurse: “guardian angel”, “doctor’s assistant”, “authoritarian nurse” and “sensual nurse”, and each one has negative aspects. Authors considered the specific perception of each of the images in social media. The remaining 76% of messages do not offer an alternative image of a nurse. The conclusion offers recommendations aimed at increasing the prestige of the profession: creating a new positive image of the profession, promoting it, encouraging nurses to join public space and increasing their autonomy.
Doc 1142 : Vector control in Zika-affected communities: Local views on community engagement and public health ethics during outbreaks
https://doi.org/10.1016/j.pmedr.2020.101059 Monica Schoch-Spana Crystal Watson Sanjana J. Ravi Diane Meyer Laura E. Pechta Dale A. Rose Keri Lubell Michelle N. Podgornik Tara Kirk Sell
• Public health authorities can mitigate community resistance to aerial spraying. • Zika-affected persons favor autonomy, transparency, reasonableness, and solidarity. • Proliferating social media and skepticism toward government present challenges. Aerial spraying of products to kill larvae or adult mosquitoes is a public health measure used to control vector-borne diseases. In some outbreaks, the intervention has evoked controversy and community resistance. This study evaluated how local opinion leaders in US localities affected by Zika think about community engagement in public health policies for outbreak response. In December 2017 through March 2018, 4 focus groups were convened in Houston, TX, New Orleans, LA, Miami, FL, and Brooklyn, NY. They discussed a hypothetical scenario that featured vector control by aerial spraying. Participants (N = 20) more readily accepted this vector control method under 4 conditions: They were informed of alternatives, benefits, and risks for human health and the environment. Public health claims were backed by objective evidence and an authority figure genuinely working in the community’s interests. They received timely notice about how to mitigate toxin exposure. And, aerial spraying helped to protect vulnerable individuals. The community engagement requirements of the local opinion leaders resonate with core principles of recent public health ethics frameworks: namely, personal autonomy, transparency, reasonableness, and solidarity. Participants foresaw problems with community consent in an era of growing social media use and mistrust in governmental and scientific authority. They also debated whether health authorities should use moral-based arguments, in addition to science-based ones, to communicate aerial spraying’s risks and benefits.
Doc 1148 : Therapeutic follow-up and network intervention as a strategy in psychosocial care
https://doi.org/10.1590/0034-7167-2018-0161 Felipe Kaê Martins Prado Marcelo Augusto de Medeiros Lourenço Larissa Barros de Souza Aline Ferreira Placeres Fernanda Carla de Assis Cândido Gabriela Zanim Camila Maria Fernandes Fantacini Regina Célia Fiorati
ABSTRACT Objective: to analyze Therapeutic Follow-Up (TF) and Network Intervention (NI) as devices for social network/Psychosocial Care Center (CAPS - Centro de Atenção Psicossocial) user staff construction. Method: an ethnographic study. Data collection instruments were participant observation, field diary, semi-structured interviews and Sluzki’s Minimal Map of Relationships. The research site was at a CAPS II of the city of São Paulo. Participants were CAPS user, their family network, professionals and other users. Data analysis took place through Minayo’s thematic content analysis framework and Sluzki’s personal maps. Results: TF and NI led to greater social participation, autonomy and reorganization of family roles and treatment in CAPS. Conclusion: the TF associated with NI was potent in strengthening the user’s personal/social network and in including them in community activities.
Doc 1169 : Assessment of dentists’ behaviour on the use of patients’ images.
https://pubmed.ncbi.nlm.nih.gov/32304263/ Eliana Dantas da Costa Luciano Augusto Cano Martins Wilson Gustavo Cral Leonardo Vieira Peroni Deborah Queiroz Freitas Matheus Lima Oliveira
Photographs and radiographs are indispensable resources for dental education, research and dissemination of clinical cases in scientific journals. The objective of this study was to evaluate the behaviour of dentists on the use of patients’ images.Fifty-two dentists were interviewed using a semi-structured script containing open-ended questions on the use of patients’ images. The answers were analysed using a qualitative-quantitative method of the discourse of the collective subject, and the distribution of the absolute and relative frequency of the answers was presented according to the central ideas obtained from the discourses.The following central ideas on the use of patients’ images were identified: (a) purpose: didactic and/or academic; (b) informed consent: verbal or absent when the patient cannot be identified; (c) discussion groups on social media contribute to learning; (d) most dentists would not appreciate and sue the author if they had their own photographs/imaging examinations posted on social media; 5. most dentists received some information on ethical regulations during dental school and state that images can be used with patient authorisation, without identification and for didactic/academic purposes.Dentists consider the use of patients’ images for didactic and scientific purposes beneficial, request informed consent to share mainly images that reveal the identity and would not appreciate if their personal images were shared without consent.
Doc 1182 : Selected aspects of health literacy among seniors.
This study aimed to map the selected indicators of health literacy in the senior population via a qualitative survey that focused specifically on its relationship with autonomy in the context of health literacy among seniors.A qualitative survey focused on the selected indicators of health literacy of seniors living in the South Bohemian Region of the Czech Republic (R1-19). The snowball sampling method was intentionally selected. Completed interviews were transcribed and data was reduced, analyzed, and categorized. The identified categories were 1) information comprehension, 2) decision-making in healthcare, and 3) compliance with nonpharmacologic treatment.The ‘information comprehension’ category clearly shows that the seniors involved in this study rated the comprehensibility of information provided by medical professionals as being good. An especially positive finding was that seniors do seek information through the internet, print sources, or other media, even though, as one senior (80-year-old woman) said, comprehension of medical information is becoming “more and more complex”. The ‘decision-making in healthcare’ category touched upon opinions regarding informed consent and opinions regarding seniors’ own involvement in healthcare. Results from this category suggest that seniors accept informed consent as a routine necessity. Inhibition regarding personal involvement in healthcare was also apparent: “… I come from a family accustomed to not bothering the doctor unnecessarily, so I just stick out my arm…” The last category of ‘compliance with nonpharmacologic treatment’ clearly shows that respondents are informed regarding lifestyle modifications that would benefit their treatment, although, few respondents had achieved the desired lifestyle changes.Results of this qualitative research show clear health literacy limits among seniors. As shown in this study, age itself could also be a limiting factor of health literacy.
Doc 1224 : The Engaged Patient: The Relevance of Patient–Physician Communication for Twenty-First-Century Health
The patient–doctor interaction has changed profoundly in the past decades. In reaction to paternalistic communication patterns, health policy makers have advocated for patient-centered care and shared decision-making. Although these models of medical communication remain still aspirational, patients have become more engaged in advocating for their own health in encounters with physicians. I argue that the engaged patient is a more accurate conceptualization of the changing role of the patient than patient consumerism, the empowered, or expert patient. I examine how the emergence of engaged patients influences the autonomy of health professionals, relates to the rise of the internet as an alternative source of medical information, centers the role of the patient–doctor interaction in public health epidemics, and contributes to health inequities.
Doc 1230 : Coping with stress in times of pandemic: A booklet proposal/ Enfrentando o estresse em tempos de pandemia: Proposição de uma Cartilha
https://doi.org/10.1590/1982-0275202037e200065 Sônia Regina Fiorim Enumo Juliana Niederauer Weide Eliana Cristina Chiminazzo Vicentini Murilo Fernandes de Araújo Wagner de Lara Machado
The COVID-19 pandemic has been a major stressor. Emotional and behavioral self-regulation can change when there is a threat/challenge to the three basic psychological needs for competence, relatedness and autonomy. Psychological knowledge, especially the Motivational Theory of Coping, about processes of coping with stress and its consequences on physical and mental health supported the proposal of a booklet, aiming to assist in the health and well-being promotion. The material was assessed online by eight judges regarding their understanding of language, content and relevance. The final version has 16 pages, illustrated, organized in three sections: Introduction, Identifying stress responses and Coping strategies related to the basic psychological needs. For each of them, the Booklet presents three charts, pointing out “Difficulties”, “What to avoid”, “What can be done”, and space for notes. This translation of scientific knowledge into promotional and psychoeducational material can be useful for lay people and can be used in health services, and it is available on social media.
Doc 1245 : Enjeux éthiques du recours à Internet par les femmes enceintes dans leur suivi de grossesse
Pregnant women are heavy users of Internet and this has an impact on their medical follow-up. The purpose of this study is to highlight the ethical issues related to the use of the Internet by women in their medical care.Through a systematic literature review conducted on PubMed/Medline, Web of Science, CINAHL and Embase between June and July 2019, 10 670 results were obtained, and 79 articles were included in the post-selection study. A thematic analysis was conducted on these articles.More than 90% of pregnant women use Internet, particularly to find medical information and social support, mainly on pregnancy and childbirth. This research allows them more equitable access to knowledge and develops their empowerment, which modifies the relationship between caregiver and patient, through the acquisition of greater autonomy for women and the development of experiential knowledge. This access offers a central and active role to pregnant women in their medical care. However, many authors also agree on the possible abuses of this use: misinformation, disproportionate information and the presence of judgment that undermine empowerment, but also digital divide and inequity in understanding information, stigmatization of women, and risks of privacy breaches on data acquired online.In order to provide pregnant women with the central and active place they seek, the authors recommend involving caregivers in the referral to reliable sites, encouraging them to develop online content, and educating pregnant women in the search for health information on Internet.
Doc 1251 : Mixed-method study on internet use and information-seeking during transition to motherhood
https://doi.org/10.1093/eurpub/ckaa165.905 Nicos Middleton I Koliandri Eleni Hadjigeorgiou Maria Karanikola Ourania Kolokotroni V Christodoulides Christiana Nicolaou Christiana Kouta
Abstract Background Traditional approaches to antenatal education have been questioned as to their effectiveness. The use of the internet for information-seeking is very prevalent, however sources are of varied quality. We explored the information-seeking behaviour of pregnant women in the context of health literacy skills and informed decision-making. Methods In a mixed-method descriptive study, 12 focus groups with a culturally diverse set of pregnant women and new mothers (N = 62), a non-participant observation study of antenatal education classes and a web-based questionnaire survey were performed (N = 200). The survey explored use and critical appraisal of internet sources of information, perceived role in assisting decision-making, user-provider interaction, alliance and autonomy in decision making. Results Six themes emerged: in a generally “unsupportive system”, pregnant women want to have a “confident voice” but find themselves “self-navigating” in parallel worlds of formal and informal information, using a process of “supplementing and filtering”, sometimes instinctively and selectively, ending up in a state of “doubt and faith” with regards to the trustworthiness of the information and physician dominance in communication, while the “art of communication” is essential to break the cycle. Internet information-searching is very prevalent, even though 60% characterize the information as misleading and 90% would like health professionals to recommend trusted sites. While the majority report discussing this information with their healthcare providers, only 57% characterize the reception as positive. Conclusions Women want to have control over decisions affecting their pregnancy. While the internet is a prevalent information source, they value the communication with their healthcare providers and want direction. Maternity healthcare professionals need to recognize the phenomenon, offer appropriate guidance and support shared decision-making. Key messages “Traditional” antenatal education arrangements are not effective in supporting informed decision-making. In a landscape of prevalent internet use, a shift is needed from current practices of unguided information-searching.
Doc 1295 : Artificial Intelligence, Social Media and Depression. A New Concept of Health-Related Digital Autonomy
The development of artificial intelligence (AI) in medicine raises fundamental ethical issues. As one example, AI systems in the field of mental health successfully detect signs of mental disorders, such as depression, by using data from social media. These AI depression detectors (AIDDs) identify users who are at risk of depression prior to any contact with the healthcare system. The article focuses on the ethical implications of AIDDs regarding affected users’ health-related autonomy. Firstly, it presents the (ethical) discussion of AI in medicine and, specifically, in mental health. Secondly, two models of AIDDs using social media data and different usage scenarios are introduced. Thirdly, the concept of patient autonomy, according to Beauchamp and Childress, is critically discussed. Since this concept does not encompass the specific challenges linked with the digital context of AIDDs in social media sufficiently, the current analysis suggests, finally, an extended concept of health-related digital autonomy.
Doc 1350 : Young people’s journeys of recovery from trauma: A qualitative study of narratives from Internet forums.
The present study aimed to address to the dearth of research into the phenomenology of recovery among young people exposed to trauma.Using an interpretative phenomenological approach, we analyzed Internet forum data to consider how young people experience recovery from trauma.Five domains of recovery were identified: meaningful shifts in the sense of self, gaining control and autonomy, establishing hope and commitment, making meaning out of tragedy, and engaging in normative activities and connecting with others. Participants described the experience of recovery as an ongoing, nonlinear and dialectical process that was not synonymous with cure and often took place in the context of supportive relationships.While the broad themes of recovery align with those derived from adult literature, the accounts diverge with respect to the content within the domains themselves. The findings suggest that services oriented to trauma-exposed young people need to bolster these internal processes of change, while also attending to their specific developmental needs and capacities. (PsycInfo Database Record (c) 2021 APA, all rights reserved).
Doc 1379 : “Sometimes I don’t have a pulse … and I’m still alive!” Interviews with healthcare professionals to explore their experiences of and views on population-based digital health technologies
Digital technologies are increasingly becoming an integral part of our daily routine and professional lives, and the healthcare field is no exception. Commercially available digital health technologies (DHTs - e.g. smartphones, smartwatches and apps) may hold significant potential in healthcare upon successful and constructive implementation. Literature on the topic is split between enthusiasm associated with potential benefits and concerns around privacy, reliability and overall effectiveness. However, little is known about what healthcare professionals (HCPs) have experienced so far with patients and what they perceive as the main advantages and disadvantages of adoption. This study therefore aims to investigate current perceptions of HCPs towards self-tracked health-related outputs from devices and apps available to the public.Nine HCPs volunteered to take part in semi-structured interviews. Related data were thematically analysed, following a deductive approach with the construction of a framework based on expected themes from the relevant literature, and themes identified from the first two interviews.The following main themes in relation to DHTs were identified and explored in detail: HCPs’ experience, knowledge and views; advantages and disadvantages; barriers towards healthcare implementation and potential solutions; future directions. While most participants were adopters of DHTs and held positive views about them, their overall experience with patients and the technology was limited. Potential reasons for this were explored, including factors such as time/resources; colleagues’ mindset; lack of evidence of effectiveness for practice; data security concerns.The potential advantages of DHTs’ adoption in healthcare are substantial, e.g. patient autonomy, time/resources saving, health and behaviour change promotion, but are presently premature. Therefore, future research is warranted, focussing on addressing barriers, minimising disadvantages, and assessing the clinical value of commercially available DHTs.
Doc 1384 : “The Disabled Community Is Still Waiting for Equality”: What do Users Have to say About Sexual Reproductive Health of Persons With Disabilities in Online News Comments
Drawing from the literature of the internet as a public sphere, the present study investigates online news comments related to sexual reproductive health of people with disabilities (PWDs) published in The New York Times and The Guardian . We analyzed 3,633 online comments published between January 1, 2016, and December 31, 2019, using thematic analysis. The findings revealed eight major themes: economic consequences; gender; stereotypes; awareness and education; independence and autonomy; medical standpoint; media portrayal; and social justice and accommodation. Further, our study found that 47% of online commenters from The NYT and 49.3% from The Guardian had a positive perception that PWDs should have equal access to sexual reproductive health, compared with non-disabled people. Our study also revealed that comments in The NYT were more focused on the legal issues in the United States, while comments in The Guardian emphasized positive media representation and human aspects of the issue.
Doc 1387 : Reasons for endorsing or rejecting self-binding directives in bipolar disorder: a qualitative study of survey responses from UK service users
Self-binding directives instruct clinicians to overrule treatment refusal during future severe episodes of illness. These directives are promoted as having the potential to increase autonomy for individuals with severe episodic mental illness. Although lived experience is central to their creation, the views of service users on self-binding directives have not been investigated substantially. This study aimed to explore whether reasons for endorsement, ambivalence, or rejection given by service users with bipolar disorder can address concerns regarding self-binding directives, decision-making capacity, and human rights.
Methods
This qualitative study used data from an internet-based survey distributed to the mailing list of the UK charity Bipolar UK, which contained multiple closed and open questions on advance decision making for patients with bipolar disorder. We included participants who reported that they have been diagnosed with bipolar disorder by a professional (doctor or psychiatrist). In a previous study, quantitative analysis of a closed question about self-binding directives had shown endorsement among a high proportion of participants with bipolar disorder who completed the survey. In this study, we did a thematic analysis of responses from those participants who answered a subsequent open question about reasons for their view. Research was done within a multidisciplinary team, including team members with clinical, legal, and ethical expertise, and lived experience of bipolar disorder. Ideas and methods associated with all these areas of expertise were used in the thematic analysis to gain insight into the thoughts of individuals with bipolar disorder about self-binding directives and associated issues.
Findings
Between Oct 23, 2017, and Dec 5, 2017, 932 individuals with a self-reported clinical diagnosis of bipolar disorder completed the internet survey, with 565 individuals (154 men, 400 women, 11 transgender or other), predominantly white British, providing free-text answers to the open question. 463 (82%) of the 565 participants endorsed self-binding directives, of whom 411 (89%) describing a determinate shift to distorted thinking and decision making when unwell as their key justification. Responses indicating ambivalence (37 [7%) of the 565 responses) were dominated by logistical concerns about the drafting and implementation of self-binding directives, whereas those who rejected self-binding directives (65 [12%] of the 565 responses) cited logistical concerns, validity of their thinking when unwell, and potential contravention of human rights.
Interpretation
This study is, to our knowledge, the first large study assessing the reasons why mental health service users might endorse or reject the use of self-binding directives. The findings provide empirical support for introducing self-binding directives into mental health services as well as advance decision-making practice and policy, and might help address enduring ethical concerns surrounding possible implementation of the directive while a person retains decision-making capacity. The opinions expressed here in responses given by multiple service users with bipolar disorder challenge a prominent view within international disability rights debates that involuntary treatment and recognition of impaired mental capacity constitute inherent human rights violations.
Funding
The Wellcome Trust.
Doc 1418 : Youths’ and Parents’ Experiences and Perceived Effects of Internet-based Cognitive Behavioral Therapy for Anxiety Disorders in Primary Care: A Mixed-Methods Study (Preprint)
https://doi.org/10.2196/26842 Josefine L. Lilja Mirna Rupcic Ljustina Linnea Nissling Anna Caroline Larsson Sandra Weineland
Background: Anxiety is common among youths in primary care. Face-to-face treatment has been the first choice for clinicians, but during the COVID-19 pandemic, digital psychological interventions have substantially increased. Few studies have examined young people’s interest in internet treatment or the attitudes they and their parents have toward it. Objective: This study aims to investigate adolescents’ and parents’ attitudes toward and experiences of internet-based cognitive behavioral anxiety treatment in primary care and its presumptive effects. Methods: The study used mixed methods, analyzing qualitative data thematically and quantitative data with nonparametric analysis. Participants were 14 adolescents and 14 parents recruited in adolescent primary health care clinics. The adolescents and their parents filled out mental health questionnaires before and after treatment, and were interviewed during ongoing treatment. Results: The quantitative data indicated that the internet-delivered cognitive behavioral therapy program used in this study was successful in reducing symptoms (χ22=8.333; P=.02) and that adolescents’ motivation is essential to the treatment outcome (r=0.58; P=.03). The qualitative results show that youths highly value their independence and freedom to organize treatment work on their own terms. The parents expressed uncertainty about their role and how to support their child in treatment. It was important for parents to respect the youths’ need for autonomy while also engaging with them in the treatment work. Conclusions: Internet treatment in primary care is accepted by both youths and their parents, who need clarification about the difference between their role and the therapist’s role. Patient motivation should be considered before treatment, and therapists need to continue to develop the virtual alliance. Finally, primary care should be clearer in informing adolescents and their parents about the possibility of internet treatment.
Doc 1421 : P109 Responsive Feeding During COVID-19: Evaluation of a Specialized Training for ECE Providers and Stakeholders.
Practicing family style meal service in early care and education (ECE) settings supports children’s autonomy and improves self-regulation of energy intake. However, during COVID-19, CDC passed a directive to ECE to pause family style meal service. Therefore, we conducted an ECE webinar focused on how to feed children responsively during plated meal service to help providers support children’s autonomy and self-regulation.
Objective
To evaluate changes in the level of understanding, behavioral intention to implement knowledge, and confidence about how to feed children (2-5 years) responsively during plated meal service. Also, to determine need for future training opportunities.
Study Design, Setting, Participants
Retrospective pretest-posttest study. The webinar was advertised through an email newsletter disseminated by a national-level platform, Penn State Extension Better Kid Care. Participants attended the online webinar for 1 hour on August 11, 2020, had access to an Extension publication (http://bit.ly/3pnJ71X) and responded to a follow-up survey (Qualtrics Link: http://bit.ly/3jMWvvv). Participants identified themselves as either ECE providers (n = 77) or other stakeholders (n = 30), who can offer opportunities or guidance to providers.
Measurable Outcome/Analysis
Change in self-reported evaluation score (range 1=low to 7=high) for understanding, behavioral intention to implement knowledge, and confidence about how to feed children responsively during plated meal service. Paired sample t tests (alpha = 0.05) followed by Sidak-Bonferroni correction (adjusted P = 0.007).
Results
Both providers and stakeholders reported significantly higher (P < 0.001) level of understanding, intention to implement knowledge obtained, and confidence regarding implementing responsive feeding during plated meal service after the webinar compared to before the webinar. Participants expressed need for online nutrition trainings with emerging themes such as feeding infants, safe food preparation and storage, flexibility of CACFP rules, and physical distance during meals.
Conclusion
Intentional mealtime conversations, giving children small tasks supporting their autonomy, and setting clear expectations while adjusting mealtime routines can offer a promising avenue for implementing responsive feeding during plated meal service.
Doc 1425 : Commentary: Social Media and the Ethical Principles of its use in Public Health and Health Education Research
Social media or web-based interventions are powerful and effi cient tools that have been widely applied in several areas of public health. Social media has become one of the most important approaches for recruitment or intervention, increasing awareness and knowledge of health issues, and in uencing attitudes towards health behavior change. The following article is a narrative review of following subtopics: a) application of social media in public health research and b) role and application of ethical principles in social media based research and highlights the application of ethical principles of autonomy, beneficence, nonmaleficence and justice and surrounding issues faced by health education researchers while conducting health education research. We propose revisions to the code of ethics for health education specialists incor-porating application of ethical principles in social media usage.
Doc 1440 : Is the Automation of Digital Mental Health Ethical? Applying an Ethical Framework to Chatbots for Cognitive Behaviour Therapy
The COVID-19 pandemic has intensified the need for mental health support across the whole spectrum of the population. Where global demand outweighs the supply of mental health services, established interventions such as cognitive behavioural therapy (CBT) have been adapted from traditional face-to-face interaction to technology-assisted formats. One such notable development is the emergence of Artificially Intelligent (AI) conversational agents for psychotherapy. Pre-pandemic, these adaptations had demonstrated some positive results; but they also generated debate due to a number of ethical and societal challenges. This article commences with a critical overview of both positive and negative aspects concerning the role of AI-CBT in its present form. Thereafter, an ethical framework is applied with reference to the themes of (1) beneficence, (2) non-maleficence, (3) autonomy, (4) justice, and (5) explicability. These themes are then discussed in terms of practical recommendations for future developments. Although automated versions of therapeutic support may be of appeal during times of global crises, ethical thinking should be at the core of AI-CBT design, in addition to guiding research, policy, and real-world implementation as the world considers post-COVID-19 society.
Doc 1446 : Caring for care: Online feedback in the context of public healthcare services
People increasingly provide feedback about healthcare services online. These practices have been lauded for enhancing patient power, choice and control, encouraging greater transparency and accountability, and contributing to healthcare service improvement. Online feedback has also been critiqued for being unrepresentative, spreading inaccurate information, undermining care relations, and jeopardising professional autonomy. Through a thematic analysis of 37 qualitative interviews, this paper explores the relationship between online feedback and care improvement as articulated by healthcare service users (patients and family members) who provided feedback across different online platforms and social media in the UK. Online feedback was framed by interviewees as, ideally, a public and, in many cases, anonymous ‘conversation’ between service users and healthcare providers. These ‘conversations’ were thought of not merely as having the potential to bring about tangible improvements to healthcare, but as in themselves constituting an improvement in care. Vital to this was the premise that providing feedback was an enactment of care - care for other patients, certainly, but also care for healthcare as such and even for healthcare professionals. Ultimately, feedback was understood as an enactment of care for the National Health Service (NHS), as symbolically encompassing all of the above. Putting these findings in dialogue with STS scholarship on care, we argue that, in this context, the provision of online feedback can be understood as a form of care that is, simultaneously, both directed at healthcare (in the round, including patients, professionals, services, organisations, and, of course, health itself) and part of healthcare. We conceptualise this as ‘caring for care’. This conceptualization moves beyond dominant framings of online feedback in terms of ‘choice’ and ‘voice’. It embeds online feedback within pre-existing healthcare systems, relations and moral commitments, foregrounds the mutuality of care relations, and draws attention to the affective labour of feedback practices.
Doc 1469 : SURVEILLANCE FOR INDEPENDENCE: DISCURSIVE FRAMEWORKS IN SMART CARE FOR DEMENTIA
Smart technologies promise a future in which the care needed by vulnerable people can be delivered at a distance, informed by Internet of Things-enabled remote sensing and by artificial intelligence used to identify problematic patterns in physiological readings and behavioural data. In this context, surveillance is widely portrayed as a means to maintain the independence of those being monitored. This paper examines the promise of smart care through analysis of documentation from policy, from research and development settings and from marketing materials aimed at carers, people living with dementia and social care agencies in the UK. For informal carers, the monitoring carried out by smart care systems is predominantly framed as reassurance for the carer, while for the person living with dementia a reassurance is offered that there will be help at times of need. For healthcare professionals, lack of knowledge is positioned as a limiting factor on providing optimal care and hence the monitoring offered by smart care becomes an ethical responsibility in the search for improved care as well as a means to increased efficiency. While smart care aims to promote independence, this form of surveillance and the AI-generated predictions that are built upon it can offer imperatives to action that may act against autonomy. To evaluate ethical implications more fully we need to move beyond the promotional discourse to find out more about how people live with such systems and how these systems become a part of the relations of expertise and responsibility that pervade care.
Doc 1484 : Artificial Intelligence, Social Media and Depression. ‘Patient’ Autonomy Revisited
“Artificial Intelligence (AI) systems are increasingly being developed and various applications are already used in medical practice. This development promises improvements in prediction, diagnostics and treatment decisions. As one example, in the field of psychiatry, AI systems can already successfully detect markers of mental disorders such as depression. By using data from social media (e.g. Instagram or Twitter), users who are at risk of mental disorders can be identified. This potential of AI-based depression detectors (AIDD) opens chances, such as quick and inexpensive diagnoses, but also leads to ethical challenges especially regarding users’ autonomy. The focus of the presentation is on autonomy-related ethical implications of AI systems using social media data to identify users with a high risk of suffering from depression. First, technical examples and potential usage scenarios of AIDD are introduced. Second, it is demonstrated that the traditional concept of patient autonomy according to Beauchamp and Childress does not fully account for the ethical implications associated with AIDD. Third, an extended concept of “Health-Related Digital Autonomy” (HRDA) is presented. Conceptual aspects and normative criteria of HRDA are discussed. As a result, HRDA covers the elusive area between social media users and patients. ”
Doc 1504 : Ethical issues related to gen editing using CRISPR-Cas9 technology
Immersed already in the 4th industrial revolution, clearly the digital age has invaded our lives. People tend to celebrate every technological and scientific advance without thinking properly about the possible undesired side effects or unexpected consequences. One of the most outstanding achievements of the last years has been the CRISPR/Cas9 technique. It seems to be the magic wand to solve whatever. In this article I propose to think critically about the ethical issues related to this incredible technique. I will focus this work on 3 ethical aspects of gene editing: 1. The link between gene editing and the old concept of eugenics; 2. Aspects related to the idea of modifying human genetics in order to conquer other planets and 3. The ethical implications of uploading all these data to the web. Finally, I suggest focusing on interdisciplinary ethical discussion, the dialogue between professionals, institutions and government which must ensure the protection of the autonomy of patients and the safeguarding of their rights. To conclude, the suggestion of considering the role of Universities in ethical education of the future professionals with a practical rather than a theoretical approach is considered, with special attention to the integration of cybernetics in medicine.
Doc 1508 : Vaccine Hesitancy in Parents: Role of Social Networks, Social Media, and Parental Autonomy
Introduction. Vaccine hesitancy in parents is a composite of multiple dimensions such as confidence, complacency, and convenience. A large proportion of parents can be deemed vaccine hesitant, meaning that their vaccine behaviors can range from delaying vaccines, skipping select vaccines, to refusal of all vaccinations. Furthermore, parental vaccine uptake rates and patterns can reflect their decisions based on the balance of parental autonomy versus protecting population health. The current manuscript uses Social Network Theory to explain some of the external influences on parental autonomy. Social networks, both private and public, play a role in vaccine decision making through providing information and support for parents in their choices. This influence, in turn, is mediated by parents’ health literacy and local vaccination policy. Discussion. Social media is an important type of public network that has an outsized influence on vaccine hesitancy. The rhetoric used on anti-vaccine websites often denigrates scientific evidence while at the same time endorsing poor-quality evidence that supports the anti-vaccine point of view. The websites continually propose new hypotheses of how vaccines can cause harm when studies refute their previous assertions, censor critics, and attack people with opposing viewpoints. The contentious nature of vaccine hesitancy based on beliefs, opinions, and attitudes needs a solution much deeper than simply providing factual knowledge or pointing people to reliable websites. Recommendations. Public health practitioners and researchers should try segmenting audiences, targeting private and public social networks, and then testing which persuasive strategies towards vaccinations appeal to different community groups.
Doc 1535 : Impact of COVID-19 pandemic on mental health, social connectedness and cognitive performance of older adults
Abstract The COVID-19 pandemic has profoundly impacted older adult’s health and well-being worldwide. We explored the impact of the COVID-19 pandemic on daily activities and mental health and its relationship with cognitive performance in older adults. Methods One-hundred individuals 60 years and older, without cognitive impairment and enrolled in the Brazilian Memory Study (BRAMS), a longitudinal study, were applied the UCLA Loneliness Scale, Perceived Stress Scale (PSS), Geriatric Depression Scale (GDS), and Mini-Mental State Examination (MMSE). Participants were asked whether they had changes in daily routine and social connectedness during the pandemic. Results Almost half of the participants (48.4%) reported that the COVID-19 pandemic significantly affected their lives, 38.9% lost a relative or friend because of COVID-19, and 60% had daily routine changes. Relationships (40.5%) and emotion (22%) were reported as the most impacted area. Stopping physical activities and stay at home represented the main routine changed for 78% of participants. The use of voice messages through mobile phones to maintain social connectedness increased from 24.2% to 42.1%. For 38% of participants, their autonomy to daily decisions decreased, and 40% complained that memory got worse during the pandemic. More than 30% felt more stress, loneliness, or depression than in the pre-pandemic period. Controlling for age, sex, and education, higher loneliness scores were significantly associated with low MMES scores (p = 0.018). Conclusion Significant changes in life, daily routine, social connectedness, and mental health-related to the COVID-19 pandemic were reported by older adult participants. Loneliness was associated with lower cognitive performance.
Doc 1549 : Perceptions of and needs for e‐Health solutions for elderly people with cognitive impairment, their caregivers and health care providers: A qualitative exploration
https://doi.org/10.1002/alz.057475 Marie‐Pierre Gagnon Mylene Boucher Mame‐Awa Ndiaye Samantha Dequanter Ronald Buyl Ellen Gorus Maaike Fobelets Maxime Sasseville Romina Barony
The prevalence of mild cognitive impairment (MCI) and mild neurocognitive disorder (mNCD) are steadily increasing in Canada. Information and communication technologies (ICTs) in health represent an innovation to promote home care and autonomy for people with various degrees of cognitive impairment. The objective of this study is to develop a web-based multicriteria decision support tool adapted to older adults with MCI or mNCD, their informal caregivers, and health care providers (HCPs) to support the development and implementation of ICTs adapted to the needs and preferences of people with cognitive impairments and their caregivers.We used a participatory research strategy to develop of a decision support tool for the use of ICTs focused on the needs of patients, their caregivers, and HCPs. Data collection consisted of semi-structured interviews with elderly people with MCI (N = 10) and caregivers of people with mNCD (N= 7) to explore their current knowledge and perceptions of various ICTs as well as their needs and preferences for such interventions and a focus group with HCPs to understand their perceptions of the needs of seniors with MCI and caregivers of people with mNCD.ICTs are seen as a beneficial solution to promote home care and autonomy for people with cognitive disorders. ICTs provide a sense of security and peace of mind, especially for caregivers of people with mNCD. However, the complexity and high cost of ICTs as well as the lack of support appear to be major limits to their use. HCP recognize the value of e-Health but claim to lack reliable information and were therefore highly unsure to recommend its use.People suffering from cognitive disorders and their caregivers are generally open to technological developments and favour the use of ICTs. For health professionals, continuous training on ICTs would make them more comfortable to recommend them to patients and their families. Although the use of ICTs is promising for maintaining elderly people with cognitive disorders at home, our study shows that it will be necessary to find ways to make them accessible to promote their use.
Doc 1552 : The Use of Digital Phenotyping in Mental Health Services: Opportunities, Ethical and Legal Issues
The widespread use of smartphones, mobile devices, wearable technology, and the increase in time online has provided the opportunity to collect data about users continuously. Several sectors such as health, economy, and entertainment have benefitted from the digital traces left by users due to the tight interactions on digital platforms. Today, it is likely to determine and predict users’ moods, behavioral patterns, habits, and personality traits with the use of digital traces that are processed using artificial intelligence techniques. Such use of digital data offers new opportunities for mental health services. Today with this method, it is possible to obtain simultaneous data on the course of the psychological disorder and create a complete and more holistic picture of the disorder by accessing data that can not be obtained from self-report assessment techniques. This new approach, which is called digital phenotyping, can improve the objectivity in diagnosis. Studies have proven digital phenotyping’s potential to determine disorders’ recurrence risk and make psychometric predictions. The studies have indicated the promising future of digital phenotyping in mental health services since the initial discussions by Jain et al. in 2015. It is reported that digital phenotyping can be used to diagnose and follow certain mental health disorders such as depression, anxiety, and schizophrenia at an early stage. However, ethical concerns such as privacy, autonomy, data security, and data confidentiality are among the critical issues surrounding the use of digital phenotyping. This paper includes essential information about the digital phenotyping method, discussions about the practical, legal and ethical concerns regarding the use of digital phenotyping in mental health services, and suggestions for future research. Keywords: Digital phenotyping, mental health, smartphone, digital data, mental health services
Doc 1557 : Thinking outside of the box through adaptive reuse of closed malls for dementia programs and services: Community workshop outcomes
Background It is estimated that 5.4 million Americans have some form of dementia and these numbers are expected to rise in the coming decades, leading to an unprecedented demand for memory care housing and services. In searching for innovative options to create more autonomy and better quality of life in dementia care settings, repurposing existing structures, in particular vacant urban malls, may be one option for the large sites needed for the European model of dementia villages. These settings may become sustainable Dementia Friendly City Centers (DFCC), because in the case of enclosed mall construction, the internal infrastructure is in place for lighting, HVAC, with varied spatial configuration of public spaces. This presentation describes the community engagement research being conducted by a research team at a Midwestern university, laying groundwork for the DFCC model for centralized dementia programs, services and attached housing. An online community workshop was held with 50 participants from multiple stakeholder groups including architect, urban planners, landscape architects, memory care administrators, medical doctors, family caregivers, university professors and students and public health employees. 5 breakout sessions were held after the initiative was introduced to the participants with topics covered which included the themes of community revitalization, building sustainability, urban regreening, onsite housing and medical care and innovation and culture change in dementia care This presentation provides the qualitative data collected through the recorded breakout sessions and the participants agreed that the DFCC model is one opportunity to make life better not only for those with needs associated with dementia now, but also for ourselves in the future. Others saw education of future stakeholders about the value of this model of care as critical in transforming current hurdles into future opportunities.
Doc 1602 : Complexity and intention to use an innovative device for post-infarction patients: rehabilitation nurses’ perspectives
Aim: This study aims to describe rehabilitation nurses’ perspectives on the complexity of and intention to use an innovative device for post-infarction patients. Design: The research employed a qualitative method, with a video demonstration, and analysis provided by the participants. To guide the study, the Technology Acceptance Model was used in order to measure perceived usefulness and perceived ease of use. Methods: Focus Groups were used to collect nurses’ perspectives on the developed device. Recruitment followed a snowball sampling method. Eligible participants received an email with an informed consent form. Privacy and confidentiality were maintained throughout. Content analysis was performed using ATLAS.ti v7, with Bardin’s technique, i.e., an a posteriori categorical organization. Results: Three categories were identified as relevant to the study objectives: “Therapeutic adherence and motivation”; “Home and autonomy of the patient and caregiver”; and “Factors that facilitate the practice of the rehabilitation nurse”. Participants felt that the innovation and technological complexity of the device might help to increase patient motivation and adherence, which would be of great use to rehabilitation nurses, allowing better intervention development. Conclusion: Participants perceived the device as useful to practice, and beneficial to post-infarction patients. Interestingly, the complexity inherent to the device is regarded as a factor that may increase motivation and adherence.
Doc 1649 : “You become a slightly better doctor”: Doctors adopting integrated medical expertise through interactions with E-patients
The accessibility of information via the internet has radically altered the doctor–patient relationship. By means of in-depth interviews with Israeli physicians from four different specialties, this study explored how physicians cope with internet-informed patients, referred to as e-patients, and examined how they make sense of their new professional roles. Findings show that three types of boundaries in the doctor–patient relationship have been blurred by the emergence of the e-patient: the boundaries between doctors’ and patients’ knowledge, between doctors’ authority and patients’ autonomy , and between positivistic knowledge and humanistic knowledge. Each of these is a boundary between liberal and non-liberal values. Only the combination of all these components produces, according to the participants, a good doctor. I call this new phenomenon integrated medical expertise and explain how it diverges from previous notions of ‘good doctoring’. • When treating e-patients, boundaries between doctor and patient become blurred. • The blurred boundaries reflect transitions from liberal to non-liberal values. • This forms an integrated medical expertise – a new form of medical professionalism.
Doc 1659 : Physician-patient relationship in dermatology: specificity of ethical issues
The article deals with ethical aspects of physician-patient relationship in dermatology, and demonstrates their influence on success of diagnostic and treatment activities and level of satisfaction with quality of medical services. Special attention is paid to the specific nature of bioethical issues in dermatology, associated with visuality and peculiarities of the course of disease, emotional and physiological background and coexisting disorders. Special priority is given to effective strategies of physician-patient communication, respect for patient autonomy and protection of confidentiality both in clinical practice, and on the Internet. It is shown that linking personal and strategic social media accounts raises a number of ethical and legal issues, associated with obtaining voluntary informed consent, compliance with standards of corporate ethics, and perception of medical information by non-professional audience. In conclusion, compliance with principles and rules of biomedical ethics is important to set constructive relations in clinical dermatological practice, ensure social trust in medicine and prepare future specialists. It is also important to discuss ethical issues in a professional community, slowly forming an interdisciplinary space of communication between physicians, health officials, specialists in bioethics, medical law, psychology and sociology of medicine.
Doc 1673 : Overextending: A Qualitative Study of Trainees Learning at the Edge of Evolving Expertise
ABSTRACT Background The challenge of graduate medical education is to prepare physicians for unsupervised practice while ensuring patient safety. Current approaches may inadequately prepare physicians due to limited opportunities for autonomy. Recent work on how trainees gain autonomy shows that they actively influence their supervisors’ entrustment decisions. If program directors more clearly understand how trainees experience increasing independence, they may better sensitize trainees to the deliberations they will face during patient care. Objective The authors sought to explore how trainees experience lessening supervision as their clinical training advances. Methods Using constructivist grounded theory, the authors recruited trainees from various specialties and training levels via email and conducted 17 semi-structured interviews from 2019 to 2020 to solicit clinical experiences during which their perceived autonomy changed. Through constant comparison and iterative analysis, key themes and conceptual relationships were identified. Results Seventeen trainees from 4 specialties described novel clinical situations that required “overextending,” or going beyond their perceived edge of evolving expertise. This move represented a spectrum based on perceived locus of control, from deliberate overextending driven by trainees, to forced overextending driven by external factors. Trainee judgments about whether or not to overextend were distilled into key questions: (1) Can I do it? (2) Must I do it? (3) Do I want to do it? and (4) Is it safe to do it? More advanced trainees posed a fifth question: (5) Am I missing something? Conclusions Decisions to move into the realm of uncertainty about capabilities carried weight for trainees. In making deliberative judgments about overextending, they attempted to balance training needs, capability, urgency, and patient safety.
Doc 1697 : Evidence-based guiding principles to build public trust in personal data use in health systems
Public trust in health systems is pivotal for their effective and efficient functioning. In particular, public trust is essential for personal data use, as demonstrated in debates in many countries, for example, about whether data from COVID-19 contact tracing apps should be pooled or remain on individuals’ smartphones. Low levels of public trust pose a risk not only to health system legitimacy but can also harm population health.Synthesising our previous qualitative and theoretical research in the English National Health Service which enabled us to conceptualise the nature of public trust in health systems, we present guiding principles designed to rebuild public trust, if lost, and to maintain high levels of public trust in personal data use within the health system, if not.To build public trust, health system actors need to not rush trust building; engage with the public; keep the public safe; offer autonomy to the public; plan for diverse trust relationships; recognise that trust is shaped by both emotion and rational thought; represent the public interest; and work towards realising a net benefit for the health system and the public.Beyond policymakers and government officials, the guiding principles address a wide range of actors within health systems so that they can work collectively to build public trust. The guiding principles can be used to inform policymaking in health and health care and to analyse the performance of different governments to see if those governments that operate in greater conformity with the guiding principles perform better.
The fireside chat features an in-depth discussion with the founder of Genobank.io regarding the future of NFT use in healthcare. NFTs are explored as a means to autonomy in health information. Citizens are slowly understanding the (digital) liquidity of thier confidential data to institutions such as payors and health systems.
Enterprise blockchain in healthcare is slowly maturing and many institutions are adopting the tools for transormation.
Questions to resolve are autonomous (asset) ownership of data, or paying a third party to catalogue an individual’s data.
Doc 1729 : Alert plan-application “MySolutions” - lived experiences of users with a serious mental illness
Introduction In daily life an alert or relaps prevention plan can be a helpful tool in preventing patients with severe mental illness (SMI) from relapse. However, patients often find it hard to keep the paper version close by. A smartphone version could be a solution. “MySolutions” is a webapplication providing the possibility to add e.g. pictures or music to the alert plan, which could be helping in time of need. Objectives To describe the lived experiences of patients with (SMI) with the webapplication ‘MySolutions’ and get insight in the helping and hindering characteristics of the application. Methods Qualitative research in a fenomenological framework. Eight interviews were held with outpatients with SMI. All interviews where methodically analyzed using the steps of Colaizzi (1978). Results In general, users were enthousiastic about the look and feel of the application. Using the application was considerd easy. Lived experiences of participants displayed the following themes: Autonomy, Acceptance, Frustration, Self confidence, and Reassurance. By practicing and adding photos and music, they perceived the webapplication to be a personal aid tool for experienced problems related to mental vulnerability in daily life. Participants also reported more difficulties in using the application in times of dysregulation. Conclusions The webapplication can be a valuable addition to the alert plan for people with SMI due to the possibility of personalization and the fact it is always available on a mobile phone. The application seems particularly suiting for people in a stabile phase. Future research should focus on phase of recovery in relation to use of the application. Disclosure No significant relationships.
Doc 1737 : An autonomy-supporting cardiovascular prevention programme: Practical recommendations from Self-Determination Theory
*Corresponding Author: Nele Jacobs; email: nele.jacobs @ uhasselt.be Abstract Health promotion is an important challenge for the health sector in the 21st century. Chronic diseases such as cardiovascular disease (CVD) can be avoided by, amongst other things, making prudent lifestyle changes. However, stimulating long-term behaviour change remains an important challenge for health promotion practitioners. SelfDetermination Theory (SDT) has been applied in various health care settings to facilitate long-term behaviour change with some evidence of positive outcomes. From the perspective of SDT the effectiveness of prevention programmes should not only be defined as the proportion of participants that comply with recommendations, but should also give information on the level of autonomous motivation of the compliers. SDT would suggest that to stimulate the development of autonomous motivation and long-term behaviour change, autonomy-supporting interventions should be developed. Health care professionals can enhance patient behaviour change outcomes through support of patients’ psychological needs for autonomy, competence, and relatedness. However, the health promotion field, involving health practitioners with various professional backgrounds, requires a more practical and specific summary of recommendations to improve the quality of intervention design. The aim of this manuscript is to describe in detail how practical recommendations from SDT were applied to a cardiovascular prevention programme in Belgium.