Thesis (M. P. H.)--University of Hong Kong, 2007.

Thesis (M. P. H.)--University of Hong Kong, 2007. / Also available in print.

Diss. (sammanfattning) Umeå : Univ., 2004. / Härtill 5 uppsatser.

Thesis (doctoral)--Universität Erlangen, 1930. / Includes bibliographical references (p. [vii]-xiii).

Master-Arbeit Univ. St. Gallen, 2006.

Access to Personal Health Information (PHI) is a valuable part of the modern health care model. Timely access to relevant PHI assists care providers in making clinical decisions and ensure that patients receive the highest quality of care. PHI is highly sensitive and unauthorized disclosure of PHI has potential to lead to social, economic, or even physical harm to the patient. Traditional electronic health (eHealth) tools are designed for the needs of care providers and are insufficient for the needs of patients. Our research goal is to investigate the requirements of electronic health care systems which place patient health and privacy above all other concerns. Control of secure resources is a well established area of research in which many techniques such as cryptography, access control, authentication, and organizational policy can be combined to maintain the confidentiality and integrity of data. Access control is the dominant data owner facing privacy control. To better understand this domain we conducted a scoping literature review to rapidly map the key concepts underpinning patient facing access controls in eHealth systems. We present the analysis of that corpus as well as a set of identified requirements. Based on the identified requirements we developed Circle of Health based Access Control (CoHBAC), a patient centered access control model. We then performed a second scoping review to extend our research beyond just access controls, which are insufficient to provide reasonable privacy alone. The second review yielded a larger, more comprehensive, set of sixty five requirements for patient centered privacy systems. We refined CoHBAC into Privacy Centered Access Control (PCAC) to meet the needs of our second set of requirements. Using the conceptual model of accountability that emerged from the reviewed literature we present the identified requirements organized into the Patient Centered Privacy Framework. We applied our framework to the Canadian health care context to demonstrate its applicability. / Graduate

No / The challenges associated with patient-based research in palliative care are well documented. This paper focuses on the ethical challenges and discusses them in the context of a pilot study to explore the palliative-care needs of patients with moderate and severe chronic obstructive pulmonary disease. The main ethical challenge encountered related to problems surrounding the use of terminology, specifically the terms ‘palliative care’ and ‘chronic obstructive pulmonary disease’. The approving ethics committee specified that these terms be removed from all patient materials in order to protect patients from undue distress. The impact of this ethical advice on patients’ ability to give fully informed consent is discussed. This paper highlights a requirement for appropriately resourced and well-managed studies in palliative care, and identifies a need for the development of appropriate strategies in order to ensure the informed participation of patients with non-cancer diagnoses in palliative-care research.

The informed consent doctrine is based on the idea that an individual possesses the right of self-determination and therefore should retain control over his or her own body. For consent to be valid, the patient must have the capacity to consent, and give the consent knowingly, and voluntarily. In defining these terms and developing guidelines for the implementation of the informed consent doctrine, the law has made many assumptions regarding human behavior. Three of these assumptions became the foci of this study. First, the law assumes that minors lack the overall competence necessary to render legally valid consent. Second, it is assumed that the provision of all treatment information will interfere with the individual's ability to provide a valid consent. And finally, it is assumed that physicians disclose treatment information in a neutral fashion. The purpose of this study was to examine the impact of the variables: age, information provided, and professional recommendation in the context of the first two components of the informed consent doctrine, capacity and knowledge. In addition, this study investigated the relationship between these variables and the treatment decision made. Sixty junior high school students and sixty college students were randomly assigned to one of six treatment variations in which the amount of information provided and the professional recommendation varied. The groups in each variation listened to two treatment dilemmas. One involved the problem of depression while enuresis was the topic of the second. The dependent measures included (1) the Capacity Scale, (2) the Knowledge Scale, and (3) the Choice Scale. It was found that adults scored significantly higher on the Capacity and Knowledge Scales than minors. Detailed information did not improve nor decrease subjects' Knowledge Scale scores. In addition, professional recommendation was found to significantly affect treatment choices made by subjects. The results was discussed in relation to the legal assumptions underlying the doctrine of informed consent as well as their implications for future research.

Informed consent for pharmacogenomic testing in people with a learning disability Background Advances in genomic healthcare will enable medication to be tailored to each individual’s needs, based on subtle genetic variations. This will result in individuals being asked to consent to genetic testing for this purpose. The recent political agenda for social change has emphasised the right of people with learning disabilities to have more autonomy and make their own decisions. There have also been significant changes in the way healthcare practitioners relate to their patients, with a shift away from paternalism towards shared decision-making. Research Aim The aims of the study were (1) to explore the information needs of people with mild to moderate learning disabilities with respect to pharmacogenomic tests and (2) to identify ways of facilitating informed consent. Methods An integrative literature review was conducted to identify research on informed consent to healthcare interventions in people with learning disabilities (Phase 1). Subsequent phases (Phases 2-4) of the study were conducted using an ethnographic approach. Phase 2 involved observation of six participants with learning disabilities undergoing a routine blood test consultation in general practice. This was followed by Phase 3, in which semi-structured interviews with 14 participants with learning disabilities were conducted. In Phase 4, three different methods were used: focus groups with carers (four paid carers, five family carers), an on-line bulletin board for healthcare professionals (five participants) and interviews with six key informants from the field of learning disability. Findings The data showed consent procedures were often inadequate and there was inconsistent knowledge of mental capacity law amongst health professionals. Provision of information to patients prior to a blood test was variable, but interviews with people with learning disabilities revealed the fact that this information may not be wanted by them. People with learning disabilities viewed pharmacogenomic tests as similar to other blood tests and would want access to them. The attitudes of paid carers and family carers differed in terms of decision-making opportunities for people with learning disabilities. Conclusions Healthcare practitioners, carers and people with learning disability need to be familiar with the principles of the Mental Capacity Act to facilitate valid consent in the healthcare context. Healthcare practitioners also need to be made aware of developments in pharmacogenomics if it is to become part of routine health care. Finally, this study demonstrated the value of qualitative research in exploring the knowledge and attitudes of people with learning disability.

Univerzita Karlova v Praze Právnická Fakulta Katedra trestního práva Centrum zdravotnického práva Lukáš Malý The Informed Consent, particularly the criminal aspects Thessis Short summary This thesis deals with a current problem of informed consent of a patient to a medical treatment, with a special regard to aspects of such consent pertaining to criminal law. Current healthcare in a vast majority of modern countries is based on the principle of informed consent. Following an introductory review of the history of the physician-patient relationship, the current legislation surrounding the informed consent is analyzed. These laws are undergoing major changes as this thesis is being finished, giving me the chance to describe both past and future legal regulation. I proceed to describe in detail when the informed consent is required, in what form must it be granted and what sort of medical information is needed to be given to the patient prior to his decision. To adequately weigh the aspects of criminal responsibility in relation to informed consent, the analysis of all possible forms of legal responsibility is performed, with some comparisons to relevant criminal regulation in other countries being made.