Towards meeting the research needs of Australian cancer consumers.

BACKGROUND: There is a growing amount of literature to support the view that active involvement in research by consumers, especially informed and networked consumers, benefits the quality and direction of research itself, the research process and, most importantly, people affected by cancer. Our exploratory project focuses on identifying their priorities and developing a process to assess the research needs of Australian cancer consumers which may be useful beyond the cancer scenario. METHODS: This project was consumer initiated, developed and implemented, with the assistance of a leading Australian cancer consumer advocacy group, Cancer Voices NSW (CVN). Such direct involvement is unusual and ensures that the priorities identified, and the process itself, are not influenced by other interests, regardless how well-intentioned they may be. The processes established, and data collection via a workshop, followed by a questionnaire to confirm and prioritise findings, and comparison with a similar UK exercise, are detailed in this paper. RESULTS: Needs across five topic areas reflecting cancer control domains (prevention and risk; screening and diagnosis; treatment; survivorship; and end of life) were identified. Cancer consumers high priority research needs were found to be: earlier diagnosis of metastatic cancers; the extent of use of best practice palliative care guidelines; identifying barriers to cancer risk behaviour change; and environmental, nutrition and lifestyle risk factors for people with cancer. A process for identifying consumers' research priorities was developed and applied; this may be useful for further investigation in this under-studied area. CONCLUSION: The findings provide a model for developing a consumer derived research agenda in Australia which can be used to inform the strategic direction of cancer research. Consumers have been seeking a workable method to achieve this and have worked in collaboration with a major cancer charity, which funds research, to do so.

Identifying and prioritising gaps in colorectal cancer trials research in Australia.

OBJECTIVES: To identify gaps in colorectal cancer clinical trials research in Australia and to suggest and prioritise trials to fill those gaps. DESIGN, SETTING AND PARTICIPANTS: Retrospective review of colorectal cancer trial activity from 1 January 2005 to 1 July 2011 in Australia and internationally, followed by a consensus meeting of consumers, health care professionals, researchers and funding agencies. MAIN OUTCOME MEASURES: Proportion of Phase III and randomised clinical trials in the areas of prevention, screening, surgery, adjuvant therapy, advanced disease and behavioural interventions, and priority areas of research identified by participants at the consensus meeting. RESULTS: The registry search identified 76 colorectal cancer clinical trials (all phases) registered in Australia from 1 January 2005 to 1 July 2011, of which 51 were Phase III or randomised, and 323 Phase III and randomised trials registered worldwide. In Australia, most trials were in advanced colorectal cancer (32), screening (10), and behavioural interventions (9). Worldwide, most Phase III or randomised trials were in advanced disease (94, 29.1%), surgery (64, 19.8%), behavioural interventions (38, 11.8%), and screening (30, 9.3%). At the consensus meeting, all participant groups emphasised the need for research in secondary prevention, screening, individualised treatments and follow-up care after treatment for colorectal cancer. CONCLUSIONS: There is a mismatch between the high proportion of registered trials in advanced colorectal cancer and the areas of priority identified. The development of specific trials in these priority areas depends on the availability of funding and the existence of plausible interventions likely to improve patient outcomes.

Incidence of metastatic breast cancer in an Australian population-based cohort of women with non-metastatic breast cancer at diagnosis.

OBJECTIVES: To estimate the incidence of metastatic breast cancer (MBC) in Australian women with an initial diagnosis of non-metastatic breast cancer. DESIGN, SETTING AND PARTICIPANTS: A population-based cohort study of all women with non-metastatic breast cancer registered on the New South Wales Central Cancer Register (CCR) in 2001 and 2002 who received care in a NSW hospital. MAIN OUTCOME MEASURES: 5-year cumulative incidence of MBC; prognostic factors for MBC. RESULTS: MBC was recorded within 5 years in 218 of 4137 women with localised node-negative disease (5-year cumulative incidence, 5.3%; 95% CI, 4.6%-6.0%); and 455 of 2507 women with regional disease (5-year cumulative incidence, 18.1%; 95% CI, 16.7%-19.7%). The hazard rate for developing MBC was highest in the second year after the initial diagnosis of breast cancer. Determinants of increased risk of MBC were regional disease at diagnosis, age less than 50 years and living in an area of lower socio-economic status. CONCLUSIONS: Our Australian population-based estimates are valuable when communicating average MBC risks to patients and planning clinical services and trials. Women with node-negative disease have a low risk of developing MBC, consistent with outcomes of adjuvant clinical trials. Regional disease at diagnosis remains an important prognostic factor.

Workforce shortages in medical oncology: a looming threat to quality cancer care.

Supply must meet demand to maintain our high standards of cancer care.

The shortage of medical oncologists: the Australian Medical Oncologist Workforce Study.

OBJECTIVE: To determine current and projected supply, demand and shortfall of medical oncologists (MOs) and the Australian chemotherapy utilisation rate. DESIGN, SETTING AND PARTICIPANTS: A 2009 cross-sectional observational study of Australian adult medical oncology practice work patterns. INSTRUMENT: Electronic or paper self-administered questionnaire. MAIN OUTCOME MEASURES: The 2009 and projected (2014) supply, demand and shortfall of full-time equivalent (FTE) MOs, and the chemotherapy utilisation rate. RESULTS: 476 medical oncology positions comprising 234 FTE MOs were identified. Of the 150 medical oncology practices, 117 (78%) were in metropolitan locations and 33 (22%) were in rural locations. The average number of new patients seen per FTE MO was 270 patients (ranging by state from 191 to 343). The demand for FTE MOs was estimated at 326 to 391 in 2009 and 361 to 432 in 2014. The shortfall of FTE MOs was estimated at 92 to 157 in 2009 and 84 to 156 in 2014. The chemotherapy utilisation rate was 19%. CONCLUSIONS: The current shortage of MOs is expected to persist in the future. National strategies are needed to increase the capacity of the medical oncology workforce and the chemotherapy utilisation rate.

Consumer input into research: the Australian Cancer Trials website.

BACKGROUND: The Australian Cancer Trials website (ACTO) was publicly launched in 2010 to help people search for cancer clinical trials recruiting in Australia, provide information about clinical trials and assist with doctor-patient communication about trials. We describe consumer involvement in the design and development of ACTO and report our preliminary patient evaluation of the website. METHODS: Consumers, led by Cancer Voices NSW, provided the impetus to develop the website. Consumer representative groups were consulted by the research team during the design and development of ACTO which combines a search engine, trial details, general information about trial participation and question prompt lists. Website use was analysed. A patient evaluation questionnaire was completed at one hospital, one week after exposure to the website. RESULTS: ACTO's main features and content reflect consumer input. In February 2011, it covered 1, 042 cancer trials. Since ACTO's public launch in November 2010, until the end of February 2011, the website has had 2, 549 new visits and generated 17, 833 page views. In a sub-study of 47 patient users, 89% found the website helpful for learning about clinical trials and all respondents thought patients should have access to ACTO. CONCLUSIONS: The development of ACTO is an example of consumers working with doctors, researchers and policy makers to improve the information available to people whose lives are affected by cancer and to help them participate in their treatment decisions, including consideration of clinical trial enrolment. Consumer input has ensured that the website is informative, targets consumer priorities and is user-friendly. ACTO serves as a model for other health conditions.

Adding value to clinical trial registries: insights from Australian Cancer Trials Online, a website for consumers.

BACKGROUND: Clinical trials registries are now operating in the USA, Europe, Australia, China, and India and more are planned. Trial registries could be an excellent source of information about clinical trials for patients and others affected by cancer as well as health care professionals, but may be difficult for patients to navigate and use. PURPOSE: An opportunity arose in Australia to develop a consumer friendly cancer clinical trials website (Australian Cancer Trials Online (ACTO), www.australiancancertrials.gov.au) using an automated data feed from two large clinical trial registries. In this article, we describe aspects of this new website, and explore ways in which such a website may add value to clinical trial data which are already collected and held by trial registries. METHODS: The development of ACTO was completed by a Web company working in close association with staff at the Australian New Zealand Clinical Trials Registry (ANZCTR), and with consumer representatives. Data for the website were sourced directly and only from clinical trial registries, thus avoiding the creation of an additional trials database. It receives an automated, daily data feed of newly registered cancer clinical trials from both the ANZCTR and Clinical Trials.gov. RESULTS: The development of ACTO exemplifies the advantage of a local clinical trial registry working with consumers to provide accessible information about cancer clinical trials to meet consumers' information needs. We found that the inclusion of a lay summary added substantial value for consumers, and recommend that consideration be given to adding a lay summary to the mandatory data items collected by all trial registries. Furthermore, improved navigation, decision support tools, and consistency in data collection between clinical trial registries will also enable consumer websites to provide additional value for users. LIMITATIONS: Clinical trial registration is not compulsory in Australia. If the additional cancer items (including a lay summary) are not provided by registrants of cancer trials on ANZCTR, this can compromise the quality and usefulness of the data for the end-user, in this case consumers, as they may encounter gaps in the data. CONCLUSION: Expanding the World Health Organization Trial Registration Data Set to include this additional information, particularly the lay summary, would be valuable. A well-coordinated system of clinical trial registration is critical to the success of efforts to provide better access for all to inform about clinical trials.

A 'Catch Up' Plan for radiotherapy in New South Wales to 2012.

In New South Wales (NSW) from 1996 to 2006, only 34-37% of newly diagnosed cancer patients were treated with radiotherapy instead of the 50% proposed by NSW Health in Radiotherapy Plans released in 1991, 1995 and 2003. As a consequence, over 50 000 cancer patients were not treated and has resulted in the estimated premature death of over 8000 patients and over 40 000 years of life lost. In 2008, there were 42 linear accelerators in NSW rather than the 62 recommended. Based on cancer incidence projections, NSW will require 69 linear accelerators in 2012--a shortfall of 27 linear accelerators. Already 15 linear accelerators have been approved. NSW Health has funding for seven extra linear accelerators, and eight extra linear accelerators are to be funded by the private sector. To make up the shortfall, a 'Catch Up' Plan is proposed for an additional 12 linear accelerators by the end of fiscal year 2012. This is estimated to cost $200 million over 4 years for one-off establishment costs for buildings and equipment plus $50 million per year for recurrent operating costs such as staff salaries. The 'Catch Up' Plan will create five new departments of radiation oncology in country hospitals and three new departments in metropolitan hospitals. These will be in addition to those already approved by NSW Health and will markedly improve access for treatment and result in an improvement in cancer survival. This significant increase in departments and equipment can only be achieved by the creation of an NSW Radiotherapy Taskforce similar to that proposed in the Baume report of 2002, 'A vision for radiotherapy'. Even if the 'Catch Up' Plan bridges the gap in service provision, forward planning beyond 2012 should commence immediately as 76 linear accelerators will be required for NSW in 2015 and 81 linear accelerators in 2017.

By invitation only - the case for breast cancer screening reminders for women over 69 years.

BACKGROUND: Breast cancer is the leading cause of cancer death in women in Australia. Early detection provides the best chance of reducing mortality and morbidity from the disease. Mammographic screening is a population health strategy for the early detection of breast cancer in Australia. Recruitment strategies such as regular advertising and biannual screening invitations are exclusively targeted at women aged 50 - 69 years. Even though they can participate, women 70 years or over are not invited or actively encouraged to undertake screening. Research has found that a routine letter of invitation increases the number of women participating in breast cancer screening. METHODS: Cancer data analysis and a literature and policy review was conducted to assess age specific breast cancer mortality rates and the legitimacy of rationale used to limit invitations for breast cancer screening to women younger than 70 years. RESULTS: The proportion of women over 69 years participating in the BreastScreen program is significantly less than rate of screening in the target age range (50-69 years). Evidence and data indicate that common justifications for limiting screening reminders to the target age range including life expectancy, comorbidities, effectiveness, treatment and cost are, for many women, unreasonable. CONCLUSION: There is now sufficient data to support a change in the targeted upper age range for breast cancer screening to improve the existing suboptimal surveillance in women aged over 69 years.

From inclusion to independence--training consumers to review research.

Health and medical research invariably impacts on the lives of everyday people. Organisations in the developed world are increasingly involving the public in health research projects, and research governance structures and processes. The form the involvement takes varies, as does the level of involvement, from individuals, to groups, to the wider community. Lay community members can be trained to independently review health and medical research, and wider societal involvement in funding decisions, can be effectively fostered. The theoretical foundation, design and development of a task based consumer-training program, including a number of enabling factors to support the success of such training are presented. This work is likely to be of value to those planning to train consumers in technical or complex areas.

Beyond scientific rigour: funding cancer research of public value.

OBJECTIVE: To identify the values deemed by cancer consumers and community members to be important in judging research, and develop an appraisal instrument for the inclusion of consumer and community values in cancer research funding decisions in an independent review process. BACKGROUND: Improvement in the level and quality of consumer involvement in research processes is becoming increasingly recognised as an important area of development in research governance. It was identified that while the current practice of selecting research based on scientific merit satisfies the need to fund research with the best scientific quality and potential for success, this may not necessarily satisfy all the needs and expectations of cancer consumers and the wider community. METHODS: A research team was established to undertake the qualitative study. A combination of focus groups and semi-structured in-depth telephone interviews were conducted to collect and verify information about the values held by cancer consumers and the wider community with regard to research. RESULTS: Consumer review criteria to guide consumers in judging the value of research, optimal rating scales to use with these criteria and views on how consumer needs should be incorporated into the process of judging and allocating research grants (e.g. the relative weight that should be given to scientific and consumer review) have been formally identified by this research. CONCLUSIONS: The findings of this study clarify consumer and community values regarding cancer research funding and offer a means to evaluate research that address these values.

Operationalising a model framework for consumer and community participation in health and medical research.

The Consumers' Health Forum of Australia and the National Health and Medical Research Council has recently developed a Model Framework for Consumer and Community Participation in Health and Medical Research in order to better align health and medical research with community need, and improve the impact of research. Model frameworks may have little impact on what goes on in practice unless relevant organisations actively make use of them. Philanthropic and government bodies have reported involving consumers in more meaningful or collaborative ways of late. This paper describes how a large charity organisation, which funds a significant proportion of Australian cancer research, operationalised the model framework using a unique approach demonstrating that it is both possible and reasonable for research to be considerate of public values.

Cancer knowledge and skills of interns in Australia and New Zealand in 2001: comparison with 1990, and between course types.

OBJECTIVE: To compare the cancer knowledge and skills of interns in 2001 who graduated from graduate medical program (GMP) courses with those from non-GMP courses, and to compare the cancer knowledge and skills of interns in 2001 with those who completed a similar survey in 1990. DESIGN: Questionnaire survey of recently graduated interns in a random sample of Australian and New Zealand hospitals. The questionnaire was designed to allow direct comparison with the 1990 survey, and was guided by the Australian Cancer Society's Ideal Oncology Curriculum for Medical Schools. RESULTS: 443 interns completed the survey (response rate, 62%; 42 were excluded, leaving 401 surveys for analysis: 118 from GMP courses and 283 from non-GMP courses). Interns from GMP courses felt more competent than those from non-GMP courses at discussing death (P = 0.02), breaking bad news (P = 0.04) and advising on smoking cessation (P = 0.02), but less competent at preparing a patient for a hazardous procedure (P = 0.02). More GMP interns would refer a breast cancer patient to a multidisciplinary clinic (83% versus 70%; P = 0.03). Knowledge about cancer risks and prognosis was significantly less in GMP interns, but GMP interns rated their clinical skills, such as taking a Pap smear, higher than non-GMP interns. The GMP and non-GMP groups did not differ in their exposure to cancer patients, but compared with 1990 interns recent graduates had less exposure to patients with cancer. CONCLUSIONS: GMP curricula appear to have successfully introduced new course material and new methods of teaching, but have not always succeeded in producing doctors with better knowledge about cancer. Recent graduates have less exposure to cancer patients than those who trained 10 years ago.