Truth, obligation and ethics in the propagation of democracy

In this paper I present an analysis of the language used by the National Endowment for Democracy (NED) on its website (NED, 2008). The specific focus of the analysis is on the NED's high usage of the word “should” revealed in computer assisted corpus analysis using Leximancer. Typically we use the word “should” as a term to propose specific courses of action for ourselves and others. It is a marker of obligation and “oughtness”. In other words, its systematic institutional use can be read as a statement of ethics, of how the NED thinks the world ought to behave. As an ostensibly democracy-promoting institution, and one with a clear agenda of implementing American foreign policy, the ethics of NED are worth understanding. Analysis reveals a pattern of grammatical metaphor in which “should” is often deployed counter intuitively, and sometimes ambiguously, as a truth-making tool rather than one for proposing action. The effect is to present NED's imperatives for action as matters of fact rather than ethical or obligatory claims.

A naturalistic inquiry of registered nurses' perspectives and expectations of psychodynamic therapeutic care in acute psychiatric inpatient facilities

Within contemporary inpatient mental health nursing practice, the psychodynamic model of care considered previously to be central to the nurse-patient relationship now seems a radical concept. It appears to exist only within primary care facilities and public health care practice settings. This naturalistic inquiry aimed to explicate mental health nurses' perspectives and expectations of providing psychodynamic therapeutic care in acute inpatient psychiatric facilities. Ten registered nurses working in acute inpatient mental health facilities were interviewed. Five themes emerged: a career for life, relating in a psychodynamic manner, swimming against the current, adopting a position of difference, and hopeful expectancy.

An ecology of centre-based child care

The studies in the thesis were derived from a program of research focused on centre-based child care in Australia. The studies constituted an ecological analysis as they examined proximal and distal factors which have the potential to affect children's developmental opportunities (Bronfenbrenner, 1979). The project was conducted in thirty-two child care centres located in south-east Queensland. Participants in the research included staff members at the centres, families using the centres and their children. The first study described the personal and professional characteristics of one hundred and forty-four child care workers, as well as their job satisfaction and job commitment. Factors impinging on the stability of care afforded to children were examined, specifically child care workers' intentions to leave their current position and actual staff turnover at a twelve month follow-up. This is an ecosystem analysis (Bronfenbrenner & Crouter, 1983), as it examined the world of work for carers; a setting not directly involving the developing child, but which has implications for children's experiences. Staff job satisfaction was focused on working with children and other adults, including parents and colleagues. Involvement with children was reported as being the most rewarding aspect of the work. This intrinsic satisfaction was enough to sustain caregivers' efforts to maintain their employment in child care programs. It was found that, while improving working conditions may help to reduce turnover, it is likely that moderate turnover rates will remain as child care staff work in relatively small centres and they leave in order to improve career prospects. Departure from a child care job appeared to be as much about improving career opportunities or changing personal circumstances, as it was about poor wages and working conditions. In the second study, factors that influence maternal satisfaction with child care arrangements were examined. The focus included examination of the nature and qualities of parental interaction with staff. This was a mesosystem analysis (Bronfenbrenner & Crouter, 1983), as it considered the links between family and child care settings. Two hundred and twenty-two questionnaires were returned from mothers whose children were enrolled in the participating centres. It was found that maternal satisfaction with child care encompassed the domains of child-centred and parent-centred satisfaction. The nature and range of responses in the quantitative and qualitative data indicated that these parents were genuinely satisfied with their children's care. In the prediction of maternal satisfaction with child care, single parents, mothers with high role satisfaction, and mothers who were satisfied with the frequency of staff contact and degree of supportive communication had higher levels of satisfaction with their child care arrangements. The third study described the structural and process variations within child care programs and examined program differences for compliance with regulations and differences by profit status of the centre, as a microsystem analysis (Bronfenbrenner, 1979). Observations were made in eighty-three programs which served children from two to five years. The results of the study affirmed beliefs that nonprofit centres are superior in the quality of care provided, although this was not to a level which meant that the care in for-profit centres was inadequate. Regulation of structural features of child care programs, per se, did not guarantee higher quality child care as measured by global or process indicators. The final study represented an integration of a range of influences in child care and family settings which may impact on development. Features of child care programs which predict children's social and cognitive development, while taking into account child and family characteristics, were identified. Results were consistent with other research findings which show that child and family characteristics and child care quality predict children's development. Child care quality was more important to the prediction of social development, while family factors appeared to be more predictive of cognitive/language development. An influential variable predictive of development was the period of time which the child had been in the centre. This highlighted the importance of the stability of child care arrangements. Child care quality features which had most influence were global ratings of the qualities of the program environment. However, results need to be interpreted cautiously as the explained variance in the predictive models developed was low. The results of these studies are discussed in terms of the implications for practice and future research. Considerations for an expanded view of ecological approaches to child care research are outlined. Issues discussed include the need to generate child care research which is relevant to social policy development, the implications of market driven policies for child care services, professionalism and professionalisation of child care work, and the need to reconceptualise child care research when the goal is to develop greater theoretical understanding about child care environments and developmental processes.

Benchmarking clinical indicators of quality for Australian residential aged care facilities

To undertake exploratory benchmarking of a set of clinical indicators of quality care in residential care in Australia, data were collected from 107 residents within four medium-sized facilities (40–80 beds) in Brisbane, Australia. The proportion of residents in each sample facility with a particular clinical problem was compared with US Minimum Data Set quality indicator thresholds. Results demonstrated variability within and between clinical indicators, suggesting breadth of assessment using various clinical indicators of quality is an important factor when monitoring quality of care. More comprehensive and objective measures of quality of care would be of great assistance in determining and monitoring the effectiveness of residential aged care provision in Australia, particularly as demands for accountability by consumers and their families increase. What is known about the topic? The key to quality improvement is effective quality assessment, and one means of evaluating quality of care is through clinical outcomes. The Minimum Data Set quality indicators have been credited with improving quality in United States nursing homes. What does this paper add? The Clinical Care Indicators Tool was used to collect data on clinical outcomes, enabling comparison of data from a small Australian sample with American quality benchmarks to illustrate the utility of providing guidelines for interpretation. What are the implications for practitioners? Collecting and comparing clinical outcome data would enable practitioners to better understand the quality of care being provided and whether practices required review. The Clinical Care Indicator Tool could provide a comprehensive and systematic means of doing this, thus filling a gap in quality monitoring within Australian residential aged care.

Perceptions of the psychological well-being and care of older home care clients : clients and their carers

Aim. To explore and compare older home care clients’ (65+) and their professionals’ perceptions of the clients’ psychological well-being and care and to identify possible differences in these perceptions. Background. Psychological well-being is considered an important dimension of quality of life. With advancing age, older people require home care support to be able to remain in their own home. The main goal of care is to maximise their independence and quality of life. Design. Descriptive, survey design with questionnaire. Methods. A postal questionnaire was distributed to 200 older home care clients and 570 social and health care professionals in 2007. The total response rate was 63%. The questionnaire consisted of questions about clients’ psychological well-being and the provision of care by home care professionals. The differences in responses between clients and professionals were analysed using cross-tabulations, the Pearson Chi-Square Test and Fisher’s Exact Tests. Results. The professional group believed that their clients did not have plans for the future. They believed that their clients felt themselves depressed and suffering from loneliness significantly more often than the client group did. The client group were also significantly more critical of the care (motivating independent actions, physical, psychological and social care) they got from the professional group than how the professionals evaluated the care they gave. Conclusions. To be able to support older clients to continue living at home, professionals need to provide a service that meets client’s own perceptions and complex social and health care needs as well as personal sense of well-being. Relevance to clinical practice. The findings offer useful insights for the professional in planning and delivering appropriate home care services. A better understanding of differences between clients’ and professionals’ perceptions could lead to a better individualised care outcome.

The Australian Palliative Care Outcomes Collaboration (PCOC) : measuring the quality and outcomes of palliative care on a routine basis

Australia is leading the way in establishing a national system (the Palliative Care Outcomes Collaboration – PCOC) to measure the outcomes and quality of specialist palliative care services and to benchmark services across the country. This article reports on analysis of data collected routinely at point-of-care on 5939 patients treated by the first fifty one services that voluntarily joined PCOC. By March 2009, 111 services have agreed to join PCOC, representing more than 70% of services and more than 80% of specialist palliative care patients nationally. All states and territories are involved in this unique process that has involved extensive consultation and infrastructure and close collaboration between health services and researchers. The challenges of dealing with wide variation in outcomes and practice and the progress achieved to date are described. PCOC is aiming to improve understanding of the reasons for variations in clinical outcomes between specialist palliative care patients and differences in service outcomes as a critical step in an ongoing process to improve both service quality and patient outcomes. What is known about the topic? Governments internationally are grappling with how best to provide care for people with life limiting illnesses and how best to measure the outcomes and quality of that care. There is little international evidence on how to measure the quality and outcomes of palliative care on a routine basis. What does this paper add? The Palliative Care Outcomes Collaboration (PCOC) is the first effort internationally to measure the outcomes and quality of specialist palliative care services and to benchmark services on a national basis through an independent third party. What are the implications for practitioners? If outcomes and quality are to be measured on a consistent national basis, standard clinical assessment tools that are used as part of everyday clinical practice are necessary.

Facilitating needs based cancer care for people with a chronic disease : evaluation of an intervention using a multi-centre interrupted time series design

Background: Palliative care should be provided according to the individual needs of the patient, caregiver and family, so that the type and level of care provided, as well as the setting in which it is delivered, are dependent on the complexity and severity of individual needs, rather than prognosis or diagnosis. This paper presents a study designed to assess the feasibility and efficacy of an intervention to assist in the allocation of palliative care resources according to need, within the context of a population of people with advanced cancer. ---------- Methods/design: People with advanced cancer and their caregivers completed bi-monthly telephone interviews over a period of up to 18 months to assess unmet needs, anxiety and depression, quality of life, satisfaction with care and service utilisation. The intervention, introduced after at least two baseline phone interviews, involved a) training medical, nursing and allied health professionals at each recruitment site on the use of the Palliative Care Needs Assessment Guidelines and the Needs Assessment Tool: Progressive Disease - Cancer (NAT: PD-C); b) health professionals completing the NAT: PD-C with participating patients approximately monthly for the rest of the study period. Changes in outcomes will be compared pre-and post-intervention.---------- Discussion: The study will determine whether the routine, systematic and regular use of the Guidelines and NAT: PD-C in a range of clinical settings is a feasible and effective strategy for facilitating the timely provision of needs based care.

The pitfalls of publicizing ethics research

What happens to our research once it hits the popular media? Do marketers know how to promote our research in a way that is understandable and complete, while still capturing an audience? This case study follows the dissemination of the results of a consumer ethics study via a single press release, along with the resulting media coverage, interviews and audience comments. Perhaps in their quest for a touch of controversy, the story picked up by the popular press was not the one intended by the authors. If getting the public story right is important, marketing academics need to spend as much time carefully crafting their press releases as they do writing journal manuscripts – they may not be able to rely on the ethics of media sub-editors who choose controversial headlines.

Clinical indicators of quality for Australian residential aged care facilities : establishing reliability, validity, and quality thresholds

Background: In response to the need for more comprehensive quality assessment within Australian residential aged care facilities, the Clinical Care Indicator (CCI) Tool was developed to collect outcome data as a means of making inferences about quality. A national trial of its effectiveness and a Brisbane-based trial of its use within the quality improvement context determined the CCI Tool represented a potentially valuable addition to the Australian aged care system. This document describes the next phase in the CCI Tool.s development; the aims of which were to establish validity and reliability of the CCI Tool, and to develop quality indicator thresholds (benchmarks) for use in Australia. The CCI Tool is now known as the ResCareQA (Residential Care Quality Assessment). Methods: The study aims were achieved through a combination of quantitative data analysis, and expert panel consultations using modified Delphi process. The expert panel consisted of experienced aged care clinicians, managers, and academics; they were initially consulted to determine face and content validity of the ResCareQA, and later to develop thresholds of quality. To analyse its psychometric properties, ResCareQA forms were completed for all residents (N=498) of nine aged care facilities throughout Queensland. Kappa statistics were used to assess inter-rater and test-retest reliability, and Cronbach.s alpha coefficient calculated to determine internal consistency. For concurrent validity, equivalent items on the ResCareQA and the Resident Classification Scales (RCS) were compared using Spearman.s rank order correlations, while discriminative validity was assessed using known-groups technique, comparing ResCareQA results between groups with differing care needs, as well as between male and female residents. Rank-ordered facility results for each clinical care indicator (CCI) were circulated to the panel; upper and lower thresholds for each CCI were nominated by panel members and refined through a Delphi process. These thresholds indicate excellent care at one extreme and questionable care at the other. Results: Minor modifications were made to the assessment, and it was renamed the ResCareQA. Agreement on its content was reached after two Delphi rounds; the final version contains 24 questions across four domains, enabling generation of 36 CCIs. Both test-retest and inter-rater reliability were sound with median kappa values of 0.74 (test-retest) and 0.91 (inter-rater); internal consistency was not as strong, with a Chronbach.s alpha of 0.46. Because the ResCareQA does not provide a single combined score, comparisons for concurrent validity were made with the RCS on an item by item basis, with most resultant correlations being quite low. Discriminative validity analyses, however, revealed highly significant differences in total number of CCIs between high care and low care groups (t199=10.77, p=0.000), while the differences between male and female residents were not significant (t414=0.56, p=0.58). Clinical outcomes varied both within and between facilities; agreed upper and lower thresholds were finalised after three Delphi rounds. Conclusions: The ResCareQA provides a comprehensive, easily administered means of monitoring quality in residential aged care facilities that can be reliably used on multiple occasions. The relatively modest internal consistency score was likely due to the multi-factorial nature of quality, and the absence of an aggregate result for the assessment. Measurement of concurrent validity proved difficult in the absence of a gold standard, but the sound discriminative validity results suggest that the ResCareQA has acceptable validity and could be confidently used as an indication of care quality within Australian residential aged care facilities. The thresholds, while preliminary due to small sample size, enable users to make judgements about quality within and between facilities. Thus it is recommended the ResCareQA be adopted for wider use.

Mapping the ethical journey of experienced nurses now practising in rural and remote hospitals in central and south-west Queensland and in domiciliary services in Brisbane : a grounded theory approach

The aim of this thesis has been to map the ethical journey of experienced nurses now practising in rural and remote hospitals in central and south-west Queensland and in domiciliary services in Brisbane. One group of the experienced nurses in the study were Directors of Nursing in rural and remote hospitals. These nurses were “hands on”, “multi-skilled “ nurses who also had the task of managing the hospital. Also there were two Directors of Nursing from domiciliary services in Brisbane. A grounded theory method was used. The nurses were interviewed and the data retrieved from the interviews was coded, categorised and from these categories a conceptual framework was generated. The literature which dealt with the subject of ethical decision making and nurses also became part of the data. The study revealed that all these nurses experienced moral distress as they made ethical decisions. The decision making categories revealed in the data were: the area of financial management; issues as end of life approaches; allowing to die with dignity; emergency decisions; experience of unexpected death; the dilemma of providing care in very difficult circumstances. These categories were divided into two chapters: the category related to administrative and financial constraints and categories dealing with ethical issues in clinical settings. A further chapter discussed the overarching category of coping with moral distress. These experienced nurses suffered moral distress as they made ethical decisions, confirming many instances of moral distress in ethical decision making documented in the literature to date. Significantly, the nurses in their interviews never mentioned the ethical principles used in bioethics as an influence in their decision making. Only one referred to lectures on ethics as being an influence in her thinking. As they described their ethical problems and how they worked through them, they drew on their own previous experience rather than any knowledge of ethics gained from nursing education. They were concerned for their patients, they spoke from a caring responsibility towards their patients, but they were also concerned for justice for their patients. This study demonstrates that these nurses operated from the ethic of care, tempered with the ethic of responsibility as well as a concern for justice for their patients. Reflection on professional experience, rather than formal ethics education and training, was the primary influence on their ethical decision making.

Legal ethics in a post-Westphalian world : building the international rule of law and otehr tasks

The emergence of strong sovereign states after the Treaty of Westphalia turned two of the most cosmopolitan professions (law and arms) into two of the least cosmopolitan. Sovereign states determined the content of the law within their borders – including which, if any, ecclesiastical law was to be applied; what form of economic regulation was adopted; and what, if any, international law applied. Similarly, states sought to ensure that all military force was at their disposal in national armies. The erosion of sovereignty in a post-Westphalian world may significantly reverse these processes. The erosion of sovereignty is likely to have profound consequences for the legal profession and the ethics of how, and for what ends, it is practised. Lawyers have played a major role in the civilization of sovereign states through the articulation and institutionalisation of key governance values – starting with the rule of law. An increasingly global profession must take on similar tasks. The same could be said of the military. This essay will review the concept of an international rule of law and its relationship to domestic conceptions and outline the task of building the international rule of law and the role that lawyers can and should play in it.

Preferences of first-time expectant mothers for care of their child : 'I wouldn't leave them somewhere that made me feel insecure'

Australia has witnessed a continual increase in maternal employment over the past two decades, which places focus on both supply of childcare and a demand for high quality care. This study examined childcare preferences regarding the return to paid work of 124 Australian women who were expecting their first child. In contrast with most studies that have retrospective designs, the design of this study presents the perspectives of women prior to the birth of their first child-that is, before they have made a final decision about child care. This study found that the majority (78 per cent) of the women intended to re-commence work within the 12 months after the birth of their child. There were two factors that were the most salient features in their decision making-the quality of care and the personal satisfaction of engaging in paid work. The findings suggest that family friendly employment practices and access to secure, high-quality child care are key to women's secure participation in the paid workforce.

Professions without borders : global ethics and the international rule of law

The emergence of strong sovereign states after the Treaty of Westphalia turned two of the most cosmopolitan professions (law and arms) into two of the least cosmopolitan. Sovereign states determined the content of the law within their borders – including which, if any, ecclesiastical law was to be applied; what form of economic regulation was adopted; and what, if any, international law applied. Similarly, states sought to ensure that all military force was at their disposal in national armies. The erosion of sovereignty in a post-Westphalian world may significantly reverse these processes. The erosion of sovereignty is likely to have profound consequences for the legal profession and the ethics of how, and for what ends, it is practised. Lawyers have played a major role in the civilization of sovereign states through the articulation and institutionalisation of key governance values – starting with the rule of law. An increasingly global profession must take on similar tasks. The same could be said of the military. This essay will review the concept of an international rule of law and its relationship to domestic conceptions and outline the task of building the international rule of law and the role that lawyers can and should play in it.

Parent decisions regarding paid work and care of the child

Australia has witnessed a continual increase in maternal employment over the past two decades, which has placed focus on child care- its effects on the child and on early childhood education and care policy and provision. The engagement of women in the paid workforce contributes to national economic development, and is recognised in government policy incentives such as cash subsidies and tax relief for child care fees. These incentives are targeted towards mothers, to encourage them to engage in paid work. Making a contribution to the family’s economy and to a mother’s economic self sufficiency are two key drivers for women’s engagement in satisfying paid work. Many women also seek to maintain a personal investment in the development of their career, simultaneously ensuring that the child is experiencing suitable care. Policies that support women’s choices for satisfying workforce engagement and care arrangements are prudent for ensuring productivity of the economy as well as for enhancing the wellbeing of parents and children (OECD, 2007). Policies that provide family friendly employment arrangements, paid parental leave, and child care support, directly affect maternal employment decisions. Availability of family friendly employment policies is viewed as one way to not only promote gender equity in employment opportunities but also support the wellbeing of children and families (OECD, 2007). Yet there are not comprehensive and coherent policies on work and family in Australia. Australia is due to implement its first paid parental leave scheme in January, 2011. At the time of the data collection of this research, June 2007 to December 2008, Australia had no statutory provision for paid parental leave. To date, most research has focused on the consequences of paid work and care decisions made by women. Far less is known about the processes of decision-making and reasons underlying women’s choices. Investigation of what is most salient for women as they make decisions regarding engagement in paid work, and care for their child is important in order to inform policy and practices related to parental leave, family friendly employment and care for the child. This prospective longitudinal research was of 124 Australian expectant first-time mothers who completed questionnaires in their third trimester of pregnancy, and again at six and twelve months postpartum. First-time expectant mothers' decisions regarding engaging in paid work and selecting care for their child represent those of a group who are invested in motherhood and have usually had direct experience of engaging in paid work. They therefore provide an important insight into society’s idealised views about motherhood and the emotional and social uncertainty of making personal decisions where the consequences of such decisions are unknown. These decisions reflect public beliefs about the role of women in contributing to the country’s productivity and decisions about providing for the economic and emotional care needs of their family. As so little is known about the reasoning and processes of decision-making of women’s choices regarding paid work and care of the child this research was designed to capture expectant first-time mother’s preferred options for engaging in paid work and the care of their child, and investigate their actual decisions made at six and 12 months postpartum. To capture preferred options, decisions and outcomes of decisions regarding paid work and care of the child a prospective longitudinal research design was utilised. This design had three important components that addressed key limitations in the extant literature. First the research commenced in pregnancy in order to investigate preferences and beliefs about paid work and care and to examine baseline data that may influence decisions made as the women returned to paid work. Second the research involved longitudinal tracking from the antenatal time point to six and 12 months postpartum in order to identify the influences on decisions made. Third the research measured outcomes of the decisions made at each time point. This research examined the intentions, preferences, beliefs, influences, and outcomes of the decisions about engagement in paid work and choice of care. The analyses examined factors predicting return to paid work, the timing of return and extent of engagement in paid work; the care for the child; satisfaction with paid work; satisfaction with care for the child, motherhood and fulfilment; and maternal wellbeing at six and 12 months postpartum. The factors of interest were both rational/economic (availability and extent of paid and unpaid maternity leave; flexible work patterns) and emotional/affective (career satisfaction, investment in motherhood, and concern with quality of care for the child). Results indicated a group preference, and realisation for, return to paid work within the first year after the birth of a child but with reduction in hours to part-time. Most women saw paid work not only as a source of income but also as source of personal satisfaction. There were four key themes arising from this research. First, the women strived to feel emotionally secure when deciding about engaging in paid work and care of the child. To achieve emotional security women made their decisions for paid work and care of the child differently. A woman’s decision for maternal employment is a function of her personal beliefs, preferences and context regarding paid work and care of the child. She adjusts her established work identity with her new identity as a mother. The second key theme from this research is that the women made their decisions for maternal employment in response to their personal context and there were different levels of opportunities between the women’s choices. There is inequity of entitlement regarding work conditions associated with a woman’s education level. This has implications for the woman’s engagement in paid work, and her child’s health and wellbeing. The third key theme is that the quality of the child’s care mattered to the women in the research. They preferred care provided by parents and/or relatives more than any other types of care. The fourth key theme identified that satisfaction and wellbeing outcomes experienced as a result of maternal employment decisions were a complex interaction between multiple factors that change across time with the ongoing development of the mother’s identity, and the development of the child. The implications for policy within Australia are that the employment of mothers in the workforce necessitates that non-parental care becomes a public concern, where there is universal access to good quality affordable care for every child, not just for those who can afford it. This is equitable and represents real choice while supporting the rights of the child (Thorpe, Cloney & Tayler, 2010), protecting and promoting the public interest (Cleveland & Krashinsky, 2010). Children’s health and wellbeing will be supported (Moore & Oberklaid, 2010) while children are in non-parental care, and they will be exposed to environments and experiences that support their learning and development. The significant design of the research enabled the trajectories of first-time expectant women to be tracked from the antenatal point to 12 months postpartum. But there were limitations: the small sample size, the over-representation of the sample being highly educated and the nature of a longitudinal research that is set within the economic, social and political context at that time. These limitations are discussed in relation to suggestions for future research.

Utility of routine data sources for feedback on the quality of cancer care: an assessment based on clinical practice guidelines

Background Not all cancer patients receive state-of-the-art care and providing regular feedback to clinicians might reduce this problem. The purpose of this study was to assess the utility of various data sources in providing feedback on the quality of cancer care. Methods Published clinical practice guidelines were used to obtain a list of processes-of-care of interest to clinicians. These were assigned to one of four data categories according to their availability and the marginal cost of using them for feedback. Results Only 8 (3%) of 243 processes-of-care could be measured using population-based registry or administrative inpatient data (lowest cost). A further 119 (49%) could be measured using a core clinical registry, which contains information on important prognostic factors (e.g., clinical stage, physiological reserve, hormone-receptor status). Another 88 (36%) required an expanded clinical registry or medical record review; mainly because they concerned long-term management of disease progression (recurrences and metastases) and 28 (11.5%) required patient interview or audio-taping of consultations because they involved information sharing between clinician and patient. Conclusion The advantages of population-based cancer registries and administrative inpatient data are wide coverage and low cost. The disadvantage is that they currently contain information on only a few processes-of-care. In most jurisdictions, clinical cancer registries, which can be used to report on many more processes-of-care, do not cover smaller hospitals. If we are to provide feedback about all patients, not just those in larger academic hospitals with the most developed data systems, then we need to develop sustainable population-based data systems that capture information on prognostic factors at the time of initial diagnosis and information on management of disease progression.