Bottom-Up Modeling of Permissions to Reuse Residual Clinical Biospecimens and Health Data

Consent forms serve as evidence of permissions granted by patients for clinical procedures. As the recognized value of biospecimens and health data increases, many clinical consent forms also seek permission from patients or their legally authorized representative to reuse residual clinical biospecimens and health data for secondary purposes, such as research. Such permissions are also granted by the government, which regulates how residual clinical biospecimens may be reused with or without consent. There is a need for increasingly capable information systems to facilitate discovery, access, and responsible reuse of residual clinical biospecimens and health data in accordance with these permissions. Semantic web technologies, especially ontologies, hold great promise as infrastructure for scalable, semantically interoperable approaches in healthcare and research. While there are many published ontologies for the biomedical domain, there is not yet ontological representation of the permissions relevant for reuse of residual clinical biospecimens and health data. The Informed Consent Ontology (ICO), originally designed for representing consent in research procedures, may already contain core classes necessary for representing clinical consent processes. However, formal evaluation is needed to make this determination and to extend the ontology to cover the new domain. This dissertation focuses on identifying the necessary information required for facilitating responsible reuse of residual clinical biospecimens and health data, and evaluating its representation within ICO. The questions guiding these studies include: 1. What is the necessary information regarding permissions for facilitating responsible reuse of residual clinical biospecimens and health data? 2. How well does the Informed Consent Ontology represent the identified information regarding permissions and obligations for reuse of residual clinical biospecimens and health data? We performed three sequential studies to answer these questions. First, we conducted a scoping review to identify regulations and norms that bear authority or give guidance over reuse of residual clinical biospecimens and health data in the US, the permissions by which reuse of residual clinical biospecimens and health data may occur, and key issues that must be considered when interpreting these regulations and norms. Second, we developed and tested an annotation scheme to identify permissions within clinical consent forms. Lastly, we used these findings as source data for bottom-up modelling and evaluation of ICO for representation of this new domain. We found considerable overlap in classes already in ICO and those necessary for representing permissions to reuse residual clinical biospecimens and health data. However, we also identified more than fifty classes that should be added to or imported into ICO. These efforts provide a foundation for comprehensively representing permissions to reuse residual clinical biospecimens and health data. Such representation fills a critical gap for developing applications which safeguard biospecimen resources and enable querying based on their permissions for use. By modeling information about permissions in an ontology, the heterogeneity of these permissions at a range of levels (e.g., federal regulations, consent forms) can be richly represented using entity-relationship links and embedded rules of inference and inheritance. Furthermore, by developing this content in ICO, missing content will be added to the Open Biological and Biomedical Ontology (OBO) Foundry, enabling use alongside other widely adopted ontologies and providing a valuable resource for biospecimen and information management. These methods may also serve as a model for domain experts to interact with ontology development communities to improve ontologies and address gaps which hinder successful uptake.PHDNursingUniversity of Michigan, Horace H. Rackham School of Graduate Studieshttp://deepblue.lib.umich.edu/bitstream/2027.42/162937/1/eliewolf_1.pd

Written consent and reproductive autonomy in the context of prenatal screening

Le test prénatal non invasif (TPNI) est une technique de dépistage prénatal qui ne présente pas de risque accru de fausse couche, peut être effectué plus tôt dans la grossesse et est plus précis que les technologies existantes. Cependant, ces avantages peuvent contribuer à l’érosion de l’autonomie reproductive. Entre 2013 et 2017, une étude intitulée PEGASE a été menée, validant les performances et l'utilité du TPNI, ainsi qu’analysant les implications économiques, éthiques, juridiques et sociales de la technologie. Le présent mémoire est basé sur les données d’une enquête auprès des professionnels de santé (N = 184). Ce mémoire aborde la relation entre les attitudes des professionnels de santé concernant a) le "consentement éclairé" et b) le "consentement écrit" dans le contexte du TPNI. Il remet en question le récit établi dans la littérature, que les professionnels qui croient que le consentement écrit pour le TPNI n'est pas important croient également que les procédures de consentement pour le TPNI «devraient devenir moins rigoureuses» (1). Les données montrent que ce sont les professionnels qui se soucient de l'autonomie qui doutent de l'importance du consentement écrit. Cela contredit le récit cité ci-dessus. Les opinions des professionnels sur le «consentement écrit» ne peuvent donc pas être utilisées pour inférer leurs opinions sur l’importance du «consentement éclairé». Il est recommandé d’enquêter les professionnels de la santé sur des considérations particulières liées à la pratique, telles que celles enquêtées dans cette étude, plutôt que d’interroger les répondants sur des concepts académiques tels le «consentement» ou l’«autonomie».Non-Invasive Prenatal Testing (NIPT) is a new generation of prenatal screening that poses no increased risk of miscarriage, can be performed earlier in the pregnancy, and is more accurate than previously existing technologies. These advantages, however, potentially contribute to eroding reproductive autonomy, already under threat from other screening methods. Between 2013 and 2017, a study titled PEGASUS was conducted, validating the performance and utility of NIPT, as well as studying the economic, ethical, legal and social implications of the technology. One of these activities was a series of surveys conducted throughout Canada in 2015-16. The present thesis is based on the data from the healthcare professionals’ survey (N=184). This thesis addresses the relationship between healthcare professionals’ beliefs regarding a) “informed consent” and b) “written consent” in the context of NIPT. It questions the established narrative in the bioethics literature, that professionals who believe written consent for NIPT is not important also believe consent procedures for NIPT “should become less rigorous” than those used for invasive prenatal testing (1). Data from the survey shows that it is precisely those professionals who care about reproductive autonomy considerations who doubt the importance of written consent for NIPT. This directly contradicts the narrative cited above. Professionals’ stated views on “written consent” thus cannot be used to infer their unstated views on the importance of “informed consent”. It is recommended to investigate particular practice-based considerations such as the ones in this study rather than querying survey respondents on scholarly concepts such as “consent” or “autonomy”

Facilitation of educators to manage their lived experiences of aggression at a Technical Vocational Education and Training (TVET) College

Abstract: Please refer to full text to view abstract.D.Phil. (Education

Inter-organisational clinical leadership and engagement.

Clinical leadership and engagement across organisational boundaries has been gaining significant attention over the last few years. Within the NHS, there has been an increased focus within policy directives and the literature on partnership working, collaborations, cross-organisational and cross-professional working. These innovative ways of working are seen as a means of improving the quality and co-ordination of patient care across the pathway, thus impacting on the patients‟ experience. Despite this focus, the evidence of what constitutes and therefore what can deliver effective inter-organisational clinical leadership and engagement within this context is sparse. This study identifies the characteristics and impact of effective clinical leadership, clinical engagement and team effectiveness when working across organisational boundaries. „Practical Recommendations‟ have been developed as a mechanism to disseminate the findings. This research is based in the real world, which is complex and messy. The study uses an interpretative stance and gains insights from a number of different perspectives. The methodological approach is action research with a single case study design. Both quantitative and qualitative data are used and these are collected through a team effectiveness tool, focus groups and semi-structured interviews. The study demonstrates there are significant improvements in the delivery of healthcare and patient experience when clinicians work effectively across the whole patient pathway, spanning organisational boundaries. The study findings are: the need for a focus or forum and for clinicians to have the time and space to initiate inter-organisational working; the power of the patient‟s voice, involvement and leadership in delivering impactful change; the need to understand organisational and personal barriers and risks to inter-organisational working; the requirement to align incentives and accountability; the need for the NHS to value service improvement approaches as well as randomised controlled trials; the necessity for clinicians to have managerial and leadership skills to effectively run inter-organisational projects; and, the necessity for senior management and corporate engagement. These findings are supported by the existing literature, whilst also contributing to knowledge and understanding. The study aligns with the current direction of increased inter-organisational working within the NHS, and illustrates the benefits of working in this way. It demonstrates the fundamental role of clinicians (especially doctors) and patients when using this approach. The „Practical Recommendations‟ offer clinicians and managers an opportunity to consider the key elements that determine the success of improvement initiatives spanning a whole pathway or health system. Additionally, this study raises several new research questions and highlights some key recommendations such as: the need to agree the level at which NHS organisations can support inter-organisational working whilst remaining financially and competitively viable; the requirement urgently to review and revise training for doctors to ensure that in the future it equips them for effective participation in inter-organisational working; and the need to ensure the patient voice is focussed on enhancing quality of life through improvements in healthcare, rather than just simple redesign projects

Reconstructing social capital in Fijian classrooms: lessons learnt from Solesolevaki

Schools play an important role in the social, cultural and psychological adjustment of a child. It is an environment where a significant part of the development of young children takes place as it is an undeniable fact that a child spends most of his/her waking time at school (Van Rossem et al., 2015). A classroom in a school is an opportune social space where social capital can thrive. This study was conducted in 2019 on how an iTaukei intangible cultural heritage, named Solesolevaki, can contribute to the inclusive social development and social capital among children. The classroom represents a suitable space where solesolevaki can be practiced and develop social capital in the process. This article first reviews the existing literature on social capital; second, it outlines the methods that were conducted in order to ascertain the aspects of solesolevaki that are applicable to a classroom; thirdly, it discusses the core findings specifically on values of engagement, trust, cooperation, collective norms, knowledge diffusion, shared futures, social inclusion, and social cohesion. The article closes with a discussion on the implications of the findings in building social capital in Fijian classrooms

A QUANTIATIVE STUDY: PUBLIC PERCEPTIONS OF MEDICAL LIBRARIANS AND IMPLICATIONS FOR COMMUNICATION AND PRACTICES

The purpose of this research study is to investigate and assess whether medical librarians, clinical medical librarians, medical informationists, etc. (referred to collectively as “medical librarians”) have an obligation beyond their particular institutional role to, or aspirationally should, provide the public with medical literature that has the potential to improve an individual’s health or the public health. The survey will examine the opinions of members of the United States (U.S.) public regarding the practices of medical librarians as these practices pertain to health promotion, patient care, medical education, and clinical research. The research design for this study is a single-phase quantitative perspective (Creswell, 2006 Joyner et al., 2013). Quantitative data was collected in a survey (Joyner et al., 2013; Visser et al., 2000). The study had a total of 415 viable responses. Overall, the researcher believes that the most significant findings pertained to the education and gender gaps. 51.8% of participants with less than a bachelor’s degree are aware of medical librarians, while 74.5% with a bachelor’s degree or higher reported awareness. Perhaps the individuals who need the most help navigating the complex U.S. health system are unaware of a potentially valuable resource. 41.1% of participants identifying as male have consulted a medical librarian for their own or for their family members’ health information-seeking needs while only 18.2% of respondents identifying as female have done so. No significant difference in the means of the two genders presented with regard to willingness to consult a medical librarian. This suggests that attempts should be made to increase consultations with women. Medical librarians are responding with initiatives to decrease the substantial inequality in information accessibility and health literacy of U.S. individuals. The work of these professionals is important, and the data resulting from this study indicates a positive public perception of medical librarians. However, it also suggests their work might not be visible to, and that there may be a gap in trust for, those who might require the services of medical librarians the most

"Hey sister! where's my kidney?" : exploring ethics and communication in organ transplantation in Gauteng, South Africa

A thesis submitted to the Faculty of Humanities, University of the Witwatersrand, Johannesburg in fulfillment of the requirements for the degree of Doctor of Philosophy December 2015Introduction South Africa is characterised by numerous dichotomies and diversities, within which its two-tier healthcare system operates. An under-resourced state sector serves a majority of the population and a resource-intensive private sector serves a small minority. Within the constitutional framework of human rights and distributive justice there are nevertheless expectations of fair and equal access to healthcare services. There is furthermore an expectation of quality care across the health system, in spite of a number of systemic challenges related to staff and equipment shortages, unrealistic working hours and poor working conditions. Organ transplant is available to different degrees within the South African healthcare sector. Whilst transplant programmes are burgeoning internationally, cadaver transplant numbers in South Africa have decreased over recent years as donor organs have become increasingly scarce. Current research suggests that these challenges to transplant in South Africa arise from aspects of personal and cultural beliefs, illegal transplant practices and resource constraints - which all serve to compromise the ethical implementation of transplant services in the two-tier healthcare system. The impact of interprofessional communication and transplant professional–patient communication has not been previously researched in South Africa. However, research into other healthcare issues has shown that communication is vital to the ethical provision of healthcare services, especially those which involve patient-centeredness and multidisciplinary interaction. Transplant involves a significant amount of communication within a particularly large network of recipients and their families, cadaver donor families, living donors and a range of transplant professionals. This communication seems a vital part of the transplant process, disseminating information which role-players need in order to promote favourable outcomes. Given the extensive networks involved in the transplant process, communication would seem to be a fertile area for research. This study aimed to explore communication in organ transplant in Gauteng province, South Africa. It considered both interprofessional communication and communication with patients as this took place within the hierarchical healthcare system and throughout the transplant process. An ethics of care framework was utilised in order to account for the expectations of care which South Africans confer upon their health system. Methods The study took place in the Gauteng province of South Africa across six healthcare institutions. Both the state and the private sector were equally represented. Altogether, thirty in-depth interviews with transplant professionals, two focus groups with transplant coordinators, two interviews with cadaver donor families, and one focus group with living kidney donors, were conducted. Thematic analysis and triangulation of the data utilising Braun and Clarke’s (2006) principles revealed three main themes relating to context, communication with patients, and interprofessional communication Findings The South African transplant context is complex and multifaceted, shaped by both the patients’ expectations of care and the transplant professionals’ perceptions of care. These expectations and perceptions are influenced by personal beliefs, suspicions of biomedicine, the media, and resource inequalities which pose challenges to accessing transplant services. The transplant context is characterised by ethical dilemmas relating to distributive justice, as questions about resource distribution and allocation of donor organs are raised. Transplant communication is influenced by context and varies depending upon role-players in transplant and the different phases of transplant. Demands for care by those hoping to receive an organ had a noticeable influence on transplant professional-potential recipient communication in the pre-transplant phase, a period when emotions of desperation and uncertainty were prominent. By the time recipients had received their organ and entered the more stable post-transplant phase, a relationship of trust developed in which communication was regular and caring roles seemed fulfilled. The opposite trend was evident in communication between transplant professionals and donor families. This was characterised by notions of care in the pre-transplant phase, contrasting with a perception amongst donor families that care was sometimes overlooked in the post-transplant phase - a time often imbued with chronic uncertainty. Even in the pre-transplant phase numerous ethical issues surrounding autonomy, decision-making and informed consent proved to complicate and challenge transplant communication. Interprofessional communication was shaped by hierarchical institutional organisation, a lack of continuity of care, and resource constraints, all of which challenged transplant professionals seeking to provide care, and sometimes resulted in aggressive interchanges. The pressure to procure an organ timeously – which could result in patient care and professional respect being somewhat disregarded – could so compromise interprofessional communications that moral distress was created. Furthermore, as a result of miscommunications, an ethical vacuum where the best interests of patients in the transplant process were not, apparently, a foremost consideration, was identified. Conclusion Transplant is a highly complex process requiring a number of different communication styles and skills and accompanied by intricate ethical challenges. Although transplant professionals seemed cognisant of the need for careful communication, inequalities, resource scarcity and conflict intervened to create a space for moral distress and uncertainty in which communication was affected, and the provision of care was the casualty. Appraising results within an ethics of care framework suggests that transplant in Gauteng cannot be considered to be a process fully informed by the imperative of care. The ethics of care proved to be a helpful framework for understanding transplant communication in Gauteng because of the way it accounts for interpersonal relationships - fundamental to the transplant process - whilst also emphasising the importance of resources necessary to provide good care. It was concluded that in the current environment, where there is little legal direction or political buy-in, transplant in Gauteng will be unable to reach its full potential.MT201

Representation of autism in Vietnamese online news media between 2006 and 2016 : a thesis submitted in partial fulfilment of the requirements for the Doctor of Philosophy degree in Communication and Journalism at Massey University, Wellington, New Zealand

Listed in 2020 Dean's List of Exceptional ThesesBeing a parent advocate of the rights of children with autism, I have witnessed how the Vietnamese news media perpetuate misrepresentation, misinformation and disinformation about autism. As the first media study of its kind in Vietnam, this thesis set out to describe, interpret and explain the issue of misrepresentation, misinformation and disinformation about autism in the Vietnamese online news media between 2006 and 2016. The literature review in chapter 1 showed that existing studies of media representation of autism elsewhere in the world mostly used manual content and framing analysis. These revealed that autism was often represented as a medical, family or social problem, mediated by damaging stereotypes and stigmas. However, the existing literature lacked explanatory depth in illuminating the macro, meso and micro contexts that shaped the media representation. This thesis drew on the combination of cultural political economy, corpus framing analysis and critical discourse analysis to understand and explain how and why Vietnamese media and news sources shaped the meanings about autism in media discourse. This mix of quantitative and qualitative approaches demonstrated its relevance in examining complex issues, which required multiple political, economic, social and cultural reasonings. Theoretically, the synergy of cultural political economy and critical discourse analysis was also resourceful in problematising and explaining the constitutive relationship between discursive structures and social reality, as discussed in chapter 2. The cultural political economy analysis of Vietnam’s state, economy and society, including its media industry, in chapters 3 and 4 contextualised the empirical analysis of media texts in later chapters. The computerized corpus framing analysis in chapter 5 provided a broad thematic overview of the media discourse, as well as captures the voice and visibility of different actors in the corpus of media coverage about autism by the 11 most popular Vietnamese online news media outlets from 2006 to 2016. The critical discourse analysis of chapters 6, 7 and 8 then examined the ideological implications and power relations of three important frames which represented autism as, variously, a social policy issue, a medical problem or family story. The thesis found that Vietnamese online news media rarely framed autism as a social policy issue in a deliberate way, even though people with autism accounted for approximately 1 to 2% of the population and autism-related matters touch millions of family members and social actors. State officials were strikingly absent from the media coverage, indicating that the media did not hold institutional stakeholders accountable, even though different Vietnamese laws have stipulated the need for universal education, integration and facilitation of individuals with disabilities in social setting. This was a Vietnam-specific perspective which contributed to the diverse global media literature on autism representation. This study showed autism was predominantly represented in the medical model as a disease that needed to be cured, rather than as a life-long disability that needed social facilitation. Doctors and service providers had the most prominent voices in the media discourse. When professionals acted as the major media sources, the critical discourse analysis demonstrated how they abused their power and access to the media by making misleading claims, sometimes overstating the efficacy of their treatment methods for their own commercial interests. In family stories, this study showed that individuals on the autism spectrum were stereotyped with troubling behaviours that caused terror, pain and even family breakup, but they rarely had the chance to speak for themselves. Media representations of family narratives were also ridden with a medicalized language about intervention and normalization efforts by “heroic” warrior mothers. The pressure to fit in with social norms was so great that parents, especially mothers, set out to fight against autism and normalize individuals on the autism spectrum, rather than accept their life-long challenges and embrace their diversity. This finding was unique to Vietnam, given its collective culture, centred on conformity, belonging and submission of the minority to the majority’s expectations. This thesis contributes to both the scholarly body of knowledge in media and communication studies about autism representation and to the generally under-developed field of media and journalism research in Vietnam. It also suggests what solutions are available to address current problems in media representation about autism in Vietnam