A survey of Australian public attitudes towards funding of high cost cancer medicines.

BACKGROUND: In the past decade many novel, and in some cases transformative, cancer medicines have entered the market. Their prices and the amount spent on them by governments have increased rapidly, bringing to the forefront trade-offs that must be made. In this paper we explore the Australian public's attitude towards the funding of high cost cancer medicines (HCCM) to inform reimbursement and health technology assessment (HTA) policy. METHODS: A survey consisting of 49 questions about the funding of HCCMs was developed by the investigators. Recruitment was conducted via Qualtrics. 1039 Australian adults completed the survey. RESULTS: The Australian public overwhelmingly supports funding of HCCMs (95.5 %) to enhance equity of access (97.8 %), and to respond to patients' needs (98 %). When respondents were challenged to balance equity versus access in different contexts inconsistencies emerged. Different demographic factors were important in predicting support for various strategies. CONCLUSION: Our results suggest that the Australian public strongly supports government funding of HCCMs and values both equity and access. Equally, however, the public is uncertain about how equity and access are to be balanced and achieved, and such ambivalence needs to be both further explored and accommodated in policy processes. Our results may be used by policymakers in Australia, and countries with similar systems and values, to further develop policies and processes for funding HCCMs.

Embedded Journalists or Empirical Critics? The Nature of The "Gaze" in Bioethics.

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Views of health journalists, industry employees and news consumers about disclosure and regulation of industry-journalist relationships: an empirical ethical study.

Bioethicists and policymakers are increasingly concerned about the effects on health journalism of relationships between journalists and private corporations. The concern is that relationships between journalists and manufacturers of medicines, medical devices, complementary medicines and food can and do distort health reporting. This is a problem because health news is known to have a major impact on the public's health-related expectations and behaviour. Commentators have proposed two related approaches to protecting the public from potential harms arising from industry-journalist interactions: greater transparency and external regulation. To date, few empirical studies have examined stakeholders' views of industry-journalist relationships and how these should be managed. We conducted interviews with 13 journalists and 12 industry employees, and 2 focus groups with consumers. Our findings, which are synthesised here, provide empirical support for the need for greater transparency and regulation of industry-journalist relationships. Our findings also highlight several likely barriers to instituting such measures, which will need to be overcome if transparency and regulation are to be accepted by stakeholders and have their intended effect on the quality of journalism and the actions of news consumers.

Power and control in interactions between journalists and health-related industries: the view from industry.

The mass media is a major source of health information for the public, and as such the quality and independence of health news reporting is an important concern. Concerns have been expressed that journalists reporting on health are increasingly dependent on their sources--including representatives of industries responsible for manufacturing health-related products--for story ideas and content. Many critics perceive an imbalance of power between journalists and industry sources, with industry being in a position of relative power, however the empirical evidence to support this view is limited. The analysis presented here--which is part of a larger study of industry-journalist relationships--draws on in-depth, semi-structured interviews with representatives of health-related industries in Australia to inductively examine their perceptions of power relations between industry and journalists. Participants painted a picture in which journalists, rather than themselves, were in a position to control the nature, extent, and outcome of their interactions with industry sources. Our results resonate with the concept of "mediatisation" as it has been applied in the domain of political reporting. It appears that, from the perspective of industry representatives, the imposition of media logic on health-related industries may inappropriately influence the information that the public receives about health-related products.

Medicine, the media and political interests.

The news media is frequently criticised for failing to support the goals of government health campaigns. But is this necessarily the purpose of the media? We suggest that while the media has an important role in disseminating health messages, it is a mistake to assume that the media should serve the interests of government as it has its own professional ethics, norms, values, structures and roles that extend well beyond the interests of the health sector, and certainly beyond those of the government. While considerable attention has been given to the ways in which uncritical publication of industry perspectives by news media can negatively impact on public understandings of health and health behaviours, we would argue that it is equally important that journalists not become the 'lapdogs' of government interests. Further, we suggest that the interests of public health may be served more by supporting the ongoing existence of an independent media than by seeking to overdetermine its purpose or scope.

Policies and practices on competing interests of academic staff in Australian universities.

OBJECTIVES: To document the existence and provisions of Australian universities' policies on the competing interests of academic staff and university practices in recording, updating and making these declarations publicly accessible. DESIGN AND SETTING: A 14-item survey was sent to the vice-chancellors of 39 Australian universities and university websites were searched for relevant policies. RESULTS: Twelve universities declined to provide any information. Of the 27 that did, all had policies on staff competing interests. Fifteen did not require regular declarations from staff and only four required annual declarations. Eight universities maintained a centralised register of COIs of all staff and six had a mechanism in place that allowed members of the public to access information on COIs. None reported that they required that staff place their COI declarations on their website profiles and none had policies that indicated that staff should declare COIs when making a public comment. CONCLUSIONS: Australian universities vary significantly in their approaches to the declaration and management of competing interests. While two-thirds of Australian universities require staff to declare competing interests, this information is mostly inaccessible to the public. Australian universities should adopt a standard approach to the declaration and management of competing interests and commit to meaningful transparency and public accountability. This could include frequently updated declarations on website profiles of all staff. In addition, dialogue about what is needed to effectively deal with competing interests should be encouraged.

The perils of a vanishing cohort: a study of social comparisons by women with advanced ovarian cancer.

OBJECTIVE: To examine the role social comparisons play in the experience of ovarian cancer patients and to consider the implications this may have for provision of supportive care services for ovarian cancer patients. METHODS: We conducted a longitudinal qualitative study of women with advanced ovarian cancer in Sydney, Australia. Semi-structured interviews were conducted with women with advanced ovarian cancer over a period of 2.5 years. Social comparisons made by 13 study participants in 33 interviews were extracted and analysed using coding categories based on social comparison theory. RESULTS: Participants favoured downward contrasts and lateral comparisons and avoided downward identifications, upward contrasts and upward identifications. Participants expressed a preference for avoiding contact with ovarian cancer patients, for the company of 'normal' others, for normalising information and information that facilitated upward identifications. CONCLUSIONS: We suggest that social comparisons made by women with ovarian cancer are influenced by specific clinical factors associated with their diagnosis-in particular, their status as a member of a 'vanishing cohort'-and argue for further research examining the specific comparison needs and preferences of patients with advanced disease and types of cancer with poor prognoses. PRACTICE IMPLICATIONS: These findings raise questions about uniform approaches to the provision of cancer care and suggest that further research may be required to ensure that interventions are appropriately tailored to the supportive care needs of patients with different types and stages of disease.

Cancer as rubbish: donation of tumor tissue for research.

Tissue banking (or biobanking), thought by many to be an essential form of medical research, has raised a number of ethical issues that highlight a need to understand the beliefs and values of tissue donors, including the motivations underlying consent or refusal to donate. Data from our qualitative study of the legal, social, and ethical issues surrounding tumor banking in New South Wales, Australia, show that participants' attitudes to donation of tumor tissue for research are partially captured by theories of weak altruism and social exchange. However, we argue that the psychological rewards of value transformation described by Thompson's rubbish theory provide additional insights into participants' attitudes to tumor donation. We believe our data provides sufficient justification for an approach to regulation of tumor banking that is aimed at fostering a relationship based on the notions of virtuous reassignment and social exchange.

Cancergazing? CA125 and post-treatment surveillance in advanced ovarian cancer.

Post-treatment surveillance of advanced ovarian cancer involves regular testing of asymptomatic patients using the CA125 test. This practice is based on a rationale that is not supported by evidence from clinical trials. This paper aims to stimulate critical reflection concerning the effect of investigative tests on clinical decisions and interactions, and the experience of illness, particularly in the context of advanced malignant disease. Drawing on the idea of the "medical gaze", and building on previous health communication research, we present an analysis of in-depth interviews and psychometric tests collected in a prospective study of 20 Australian women with advanced ovarian cancer conducted between 2006 and 2009. We describe the demands placed on patients by the use of the CA125 test, some hazards it creates for decision-making, and some of the test's subjective benefits. It is widely believed that the CA125 test generates anxiety among patients, and the proposed solution is to educate women more about the test. We found no evidence that anxiety was a problem requiring a response over and above existing services. We conclude that the current debate is simplistic and limited. Focussing on patient anxiety does not account for other important effects of post-treatment surveillance, and educating patients about the test is unlikely to mitigate anxiety because testing is part of a wider process by which patients become aware of a disease that--once it has relapsed--will certainly kill them in the near future.

An empirical reappraisal of public trust in biobanking research: rethinking restrictive consent requirements.

Collections of human tissue removed from patients in the course of medical diagnosis or therapy are believed to be an increasingly important resource for medical research (biobank research). As a result of a number of tissue-related "scandals" and increasing concern about ownership and privacy, the requirements to obtain consent from tissue donors are becoming increasingly stringent. The authors' data show that members of the general public perceive academic biobank researchers and their institutions to be highly trustworthy and do not see the need for recurrent, project-specific consent. They argue, on the basis of their empirical findings, that we should question the trend, at least in some settings, toward ever more stringent consent requirements for the use of tissue in research. They argue that this approach, while perhaps counterintuitive in the current regulatory environment, can be both ethically and legally sound so long as channels of communication are maintained and third-party relationships are tightly controlled.

Why might people donate tissue for cancer research? Insights from organ/tissue/blood donation and clinical research.

Little is known about why patients with cancer do or do not donate their biopsied/cancerous tissue to research. A review of the literature on motivations to participate in clinical research and to donate tissues/organs for therapeutic use may provide some insights relevant to tumour banking research. While more research is necessary, a better understanding of the factors that motivate patients to give or refuse consent to tumour banking may ultimately improve consent practices, public trust and donation rates.