Access, equity and the role of rights in health care

Modern health care rhetoric promotes choice and individual patient rights as dominant values. Yet we also accept that in any regime constrained by finite resources, difficult choices between patients are inevitable. How can we balance rights to liberty, on the one hand, with equity in the allocation of scarce resources on the other? For example, the duty of health authorities to allocate resources is a duty owed to the community as a whole, rather than to specific individuals. Macro-duties of this nature are founded on the notion of equity and fairness amongst individuals rather than personal liberty. They presume that if hard choices have to be made, they will be resolved according to fair and consistent principles which treat equal cases equally, and unequal cases unequally. In this paper, we argue for greater clarity and candour in the health care rights debate. With this in mind, we discuss (1) private and public rights, (2) negative and positive rights, (3) procedural and substantive rights, (4) sustainable health care rights and (5) the New Zealand booking system for prioritising access to elective services. This system aims to consider: individual need and ability to benefit alongside the resources made available to elective health services in an attempt to give the principles of equity practical effect. We describe a continuum on which the merits of those, sometimes competing, values-liberty and equity-can be evaluated and assessed.

Health law : scope, sources and forces

• For the purposes of this chapter, “health law” encapsulates regulation of the medical and health professions, the administration of health services and the maintenance of public health to the extent that it is connected to the provision of health services. • There are diverging views as to whether health law can be regarded as a discrete “area of law”. • Health law draws on other areas of law such as tort law, criminal law and family law. It is also draws upon other disciplines, most notably medical and health ethics. • Social and economic forces have influenced the development and direction of health law, and these forces may become even more influential as the century develops. • The increasingly globalised world has implications for Australia’s health systems and raises questions and creates commitments in respect of the international community. • Technological developments, including in respect of treatment, diagnosis and information management, create ongoing challenges for health law. • Patient rights, human rights and consumerism are increasingly key drivers in the development of health law. • Health law is significant to contemporary Australian society because of the gravity of the topics that fall within its ambit, its social relevance to so many aspects of human existence and endeavour, the important role it plays in protecting the vulnerable, and the extent to which it engages with fundamental principles of justice.

Health law : scope, sources and forces

• For the purposes of this chapter, “health law” encapsulates regulation of the medical and health professions, the administration of health services and the maintenance of public health to the extent that it is connected to the provision of health services. • There are diverging views as to whether health law can be regarded as a discrete “area of law”. • Health law draws on other areas of law such as tort law, criminal law and family law. It also draws upon other disciplines, most notably medical and health ethics. • Social and economic forces have influenced the development and direction of health law, and these forces may become even more influential in the future. • The increasingly globalised world has implications for Australia's health systems and raises questions and creates commitments in respect of the international community. • Technological developments, including in respect of treatment, diagnosis and information management, create ongoing challenges for health law. • Patient rights, human rights and consumerism are increasingly key drivers in the development of health law. • Health law is significant to contemporary Australian society because of the gravity of the topics that fall within its ambit, its social relevance to so many aspects of human existence and endeavour, the important role it plays in protecting the vulnerable, and the extent to which it engages with fundamental principles of justice.

Analysis of educational materials and destruction/opt-out initiatives for storage and use of residual newborn screening samples.

In recent years, the storage and use of residual newborn screening (NBS) samples has gained attention. To inform ongoing policy discussions, this article provides an update of previous work on new policies, educational materials, and parental options regarding the storage and use of residual NBS samples. A review of state NBS Web sites was conducted for information related to the storage and use of residual NBS samples in January 2010. In addition, a review of current statutes and bills introduced between 2005 and 2009 regarding storage and/or use of residual NBS samples was conducted. Fourteen states currently provide information about the storage and/or use of residual NBS samples. Nine states provide parents the option to request destruction of the residual NBS sample after the required storage period or the option to exclude the sample for research uses. In the coming years, it is anticipated that more states will consider policies to address parental concerns about the storage and use of residual NBS samples. Development of new policies regarding storage and use of residual NBS samples will require careful consideration of impact on NBS programs, parent and provider educational materials, and respect for parents among other issues.

Internationalisation des services génétiques : Perspectives légales et éthiques

L’internationalisation des services génétiques s’explique à la fois par la rareté de certains troubles génétiques et par le nombre restreint de laboratoires effectuant des tests spécialisés. Par leur nature même, les tests génétiques comportent des risques et doivent faire l’objet d’un contrôle serré. L’absence de contrôle international des laboratoires génétiques soulève d’importantes questions juridiques et éthiques. Le présent mémoire démontre, dans un premier article, les normes d’encadrement des laboratoires génétiques canadiens. Un second article compare des normes d’encadrement des laboratoires génétiques dans quatre pays membres de l’OCDE : la France, les États-Unis, l’Australie et le Royaume-Uni. Dans troisième article, les principaux droits des patients des services génétiques au Canada, aux États-Unis, en Australie et au Royaume-Uni sont comparés. Finalement, un quatrième article analyse les implications éthiques de la coexistence de différentes normes d’encadrement des laboratoires et des droits des patients, dans le contexte actuel d’internationalisation des services génétiques. Cette analyse éthique est effectuée selon trois perspectives reconnues : le principisme, l’utilitarisme et le déontologisme. L’hétérogénéité des normes régissant les laboratoires génétiques soulève des questions éthiques et démontre la nécessité d’ouvrir un dialogue international afin d’uniformiser les normes d’encadrement des laboratoires génétiques.

Committees for ethics in research involving human subjects

In Brazil since October 1996 there have been guidelines for research involving human subjects. Now human subjects know when their treatment is part of research. Deceit is no longer tolerated. But is not enough to say we offer an explanation to the potential subject and we offer a choice before he or she is confronted with an informed consent form. As in all professional activity, scientific investigation needs social controls. In Brazil, the ultimate responsibility of an investigation lies on the investigator, but in every institution where research is carried out there is a Committee for Ethics in Research. All Committees are subordinated to the National Commission of Ethics in Research, which is submitted to the Brazilian Institute of Health. During 2005 around 17,000 protocols involving 700,000 human subjects were revised by 475 Committees distributed all over the country. Approximately 7,000 people are now working in these Committees.

Assessment of tuberculosis treatment accessibility for patients co-infected or not with the human immunodeficiency virus

This study aimed to evaluate accessibility to treatment for people with TB co-infected or not with HIV. This cross-sectional study addressed issues regarding accessibility to treatment in a city in the interior of Sao Paulo state, Brazil. The instrument Primary Care Assessment Tool was utilized with 95 people. To evaluate access to treatment, Student's t test was used. The mean scores of variables were analyzed separately and compared between two groups (people with TB co-infected with HIV and people with TB not co-infected with HIV). Mean scores showed that HIV co-infected people presented greater difficulties in gaining access than those not co-infected. Professionals visited co-infected people more often when compared to those not co-infected; the co-infected people almost never accessed treatment for their disease in the Health Unit nearest their home. There is, therefore, the need for greater integration and communication between the programs for treatment of Tuberculosis and STD/AIDS.

Avaliação do acesso ao tratamento de tuberculose por coinfectados ou não pelo vírus da imunodeficiência humana

Este estudo objetivou avaliar o acesso ao tratamento das pessoas com tuberculose tanto coinfectadas ou não pelo Vírus da Imunodeficiência Humana (HIV). Trata-se de estudo transversal - com utilização do instrumento Primary Care Assessment Tool aplicado a 95 pessoas - que abordou questões sobre o acesso ao tratamento em município do interior paulista. Para avaliação do acesso ao tratamento, utilizou-se o teste t de Student. Os escores médios das variáveis foram analisados individualmente e comparados entre os dois grupos (pessoas com TB e coinfectadas com HIV e pessoas com TB não coinfectadas pelo HIV). Os escores médios mostraram que as coinfectadas pelo HIV apresentaram maiores dificuldades na obtenção do acesso do que as não coinfectadas. Os profissionais visitavam mais vezes as coinfectadas quando comparadas às não coinfectadas; as coinfectadas quase nunca realizavam o tratamento da doença em posto de saúde perto de sua residência. Há, portanto, necessidade de maior integração e comunicação entre os Programas de Tuberculose e DST/aids.

Office of Consumer Health Insurance annual report.

"Section 90(a)(7)(215 ILCS 134/90(a)(7))--requires OCHI to file an annual report with the Governor, the Director of Insurance, and the General Assembly."

Odpowiedzialność za szkodę medyczną wynikającą ze zdarzenia medycznego – pojęcie zdarzenia medycznego

Artykuł dotyczy problematyki pojęcia zdarzenia medycznego, a zatem kwestii wyznaczających przedmiotowy zakres postępowania przed wojewódzką komisją do spraw orzekania o zdarzeniach medycznych. Pojęcie zdarzenia medycznego jest pojęciem normatywnym i zostało ono zdefiniowane w art. 67a ust. 1 ustawy o prawach pacjenta i Rzeczniku Praw Pacjenta. W pierwszej kolejności zostały omówione zagadnienia ogólne dotyczące postępowania przed wojewódzką komisją do spraw orzekania o zdarzeniach medycznych. Dalsze rozważania dotyczą przesłanek rozpoznania sprawy przez wojewódzką komisję. Autorka wyjaśnia znaczenie poszczególnych pojęć ustawowych składających się na pojęcie „zdarzenia medycznego”, tj. terminu: pacjent, zakażenie, biologiczny czynnik chorobotwórczy, uszkodzenie ciała, rozstrój zdrowia, śmierć oraz aktualna wiedza medyczna. W artykule ponadto poruszono istotną problematykę miejsca wystąpienia zdarzenia medycznego, a także podano przykłady zdarzeń medycznych.

Under the carpet : the politics and trauma of patient harm

Few studies have investigated iatrogenic outcomes from the viewpoint of patient experience. To address this anomaly, the broad aim of this research is to explore the lived experience of patient harm. Patient harm is defined as major harm to the patient, either psychosocial or physical in nature, resulting from any aspect of health care. Utilising the method of Consensual Qualitative Research (CQR), in-depth interviews are conducted with twenty-four volunteer research participants who self-report having been severely harmed by an invasive medical procedure. A standardised measure of emotional distress, the Impact of Event Scale (IES), is additionally employed for purposes of triangulation. Thematic analysis of transcript data indicate numerous findings including: (i) difficulties regarding patients‘ prior understanding of risks involved with their medical procedure; (ii) the problematic response of the health system post-procedure; (iii) multiple adverse effects upon life functioning; (iv) limited recourse options for patients; and (v) the approach desired in terms of how patient harm should be systemically handled. In addition, IES results indicate a clinically significant level of distress in the sample as a whole. To discuss findings, a cross-disciplinary approach is adopted that draws upon sociology, medicine, medical anthropology, psychology, philosophy, history, ethics, law, and political theory. Furthermore, an overall explanatory framework is proposed in terms of the master themes of power and trauma. In terms of the theme of power, a postmodernist analysis explores the politics of patient harm, particularly the dynamics surrounding the politics of knowledge (e.g., notions of subjective versus objective knowledge, informed consent, and open disclosure). This analysis suggests that patient care is not the prime function of the health system, which appears more focussed upon serving the interests of those in the upper levels of its hierarchy. In terms of the master theme of trauma, current understandings of posttraumatic stress disorder (PTSD) are critiqued, and based on data from this research as well as the international literature, a new model of trauma is proposed. This model is based upon the principle of homeostasis observed in biology, whereby within every cell or organism a state of equilibrium is sought and maintained. The proposed model identifies several bio-psychosocial markers of trauma across its three main phases. These trauma markers include: (i) a profound sense of loss; (ii) a lack of perceived control; (iii) passive trauma processing responses; (iv) an identity crisis; (v) a quest to fully understand the trauma event; (vi) a need for social validation of the traumatic experience; and (vii) posttraumatic adaption with the possibility of positive change. To further explore the master themes of power and trauma, a natural group interview is carried out at a meeting of a patient support group for arachnoiditis. Observations at this meeting and members‘ stories in general support the homeostatic model of trauma, particularly the quest to find answers in the face of distressing experience, as well as the need for social recognition of that experience. In addition, the sociopolitical response to arachnoiditis highlights how public domains of knowledge are largely constructed and controlled by vested interests. Implications of the data overall are discussed in terms of a cultural revolution being needed in health care to position core values around a prime focus upon patients as human beings.