Carla Saunders

Status, challenges and facilitators of consumer involvement in Australian health and medical research

BackgroundThe emergent international practice of involving consumers in health research is driven, in part, by the growing share of health research that can only be applied in and emerge from knowledge that is shaped by human values and societal contexts. This is the first investigation of its kind to identify the current prevalence, challenges, enabling factors and range of approaches to consumer involvement in health and medical research in Australia.MethodsA nation-wide survey of research funding organisations and organisations that conduct research was performed during 2008-2009.ResultsMarked variation in consumer involvement experience and perceptions exists between research funders and researchers. Research funders were over eight times more likely than organisations conducting research to involve consumers in identifying research needs and prioritising research topics. Across both groups, practical and time constraints were reported as key challenges to involving consumers, while guidelines on consumer involvement and evidence of effect were the most important potential enablers. More than a third of research organisations indicated that when consumer involvement was a condition of research funding, it was an important facilitator of involvement.ConclusionIt is no longer simply enough to keep society informed of important scientific breakthroughs. If Australian health research is to take into account important social contexts and consequences, it must involve consumers. A set of minimum consumer involvement standards and associated guidelines, that are agreed and routinely adopted, could ensure that consumers and the Australian community they represent, are given an opportunity to shed light on experiences and local circumstance, and express views and concerns relevant to health research.

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.

Cancer patient experience measures: An evidence review

ABSTRACT Objectives: This research investigates the instruments currently available to measure the cancer patient experience of health care. An investigation of the number of instruments, the domains covered by the instruments, and the structure and psychometric performance of instruments is undertaken. Methods: A narrative synthesis approach is used to gather evidence from multiple studies and explain the findings. Purposely broad search terms and strategies are used to capture studies with cancer patients at all stages of disease and across a range of cancer types and health care settings. Results: The majority of identified instruments were originally designed for the oncology field. Twelve of the studies developed new cancer patient measures; eight studies adapted existing or utilized items from existing instruments, and seven studies assessed the psychometric properties of existing instruments or assessed validated tools under different conditions (e.g., cross-cultural adaptation). The number of instruments assessing cancer patient experience that have sound psychometric properties across items was found to be low. The properties least tested are test–retest reliability, construct, convergent and discriminant validity, scale variability (floor/ceiling effects), and interpretability. Conclusion: This review examined 10 years of research on the development of instruments to measure the cancer patient experience of health care. It found that research in this area is still in early stages of development. Further inquiry based on development and validation of cancer patient experience measures is required to support improvements in cancer care based on the perspective of cancer patients.

Towards meeting the research needs of Australian cancer consumers

BackgroundThere 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.MethodsThis 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.ResultsNeeds 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.ConclusionThe 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.

Home care in Australia: an integrative review

ABSTRACT The home care sector comprises one of Australia’s fastest growing workforces, yet few papers capture the overall landscape of Australian home care. This integrative review investigates home care with the aim of better understanding care recipients and their needs, funding, and regulation; care worker skills, tasks, demographics, employment conditions, and training needs. Over 2,700 pieces of literature were analyzed to inform this review. Results suggest sector fragmentation and a home care workforce who, although well-placed to improve outcomes for care recipients, are in need of better training and employment support. Suggestions for future research regarding Australian home care include studies that combine both aged and disability aspects of care, more research around care recipients, priority needs and strategies for addressing them, and how best to prepare home care workers for their roles.

Is health systems integration being advanced through Local Health District planning

Objective Delivering genuine integrated health care is one of three strategic directions in the New South Wales (NSW) Government State Health Plan: Towards 2021. This study investigated the current key health service plan of each NSW Local Health District (LHD) to evaluate the extent and nature of health systems integration strategies that are currently planned. Methods A scoping review was conducted to identify common key principles and practices for successful health systems integration to enable the development of an appraisal tool to content assess LHD strategic health service plans. Results The strategies that are planned for health systems integration across LHDs focus most often on improvements in coordination, health care access and care delivery for complex at-risk patients across the care continuum by both state- and commonwealth-funded systems, providers and agencies. The most common reasons given for integrated activities were to reduce avoidable hospitalisation, avoid inappropriate emergency department attendance and improve patient care. Conclusions Despite the importance of health systems integration and finding that all NSW LHDs have made some commitment towards integration in their current strategic health plans, this analysis suggests that health systems integration is in relatively early development across NSW. What is known about the topic? Effective approaches to managing complex chronic diseases have been found to involve health systems integration, which necessitates sound communication and connection between healthcare providers across community and hospital settings. Planning based on current health systems integration knowledge to ensure the efficient use of scarce resources is a responsibility of all health systems. What does this paper add? Appropriate planning and implementation of health systems integration is becoming an increasingly important expectation and requirement of effective health systems. The present study is the first of its kind to assess the planned activity in health systems integration in the NSW public health system. NSW health districts play a central role in health systems integration; each health service plan outlines the strategic directions for the development and delivery of all state-funded services across each district for the coming years, equating to hundreds of millions of dollars in health sector funding. The inclusion of effective health systems integration strategies allows Local Health Districts to lay the foundation for quality patient outcomes and long-term financial sustainability despite projected increases in demand for health services. What are the implications for practice? Establishing robust ongoing mechanisms for effective health systems integration is now a necessary part of health planning. The present study identifies several key areas and strategies that are wide in scope and indicative of efforts towards health systems integration, which may support Local Health Districts and other organisations in systematic planning and implementation.

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

BackgroundBreast 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.MethodsCancer 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.ResultsThe 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.ConclusionThere 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.