Lifting the lifegiving dollar : case samples of creative practice in health and medical research philanthropy

This study aims to stimulate thought, debate and action for change on this question of more vigorous philanthropic funding of Australian health and medical research (HMR). It sharpens the argument with some facts and ideas about HMR funding from overseas sources. It also reports informed opinions from those working, giving and innovating in this area. It pinpoints the range of attitudes to HMR giving, both positive and negative. The study includes some aspects of Government funding as part of the equation, viewing Government as major HMR givers, with particular ability to partner, leverage and create incentives. Stimulating new philanthropy takes active outreach. The opportunity to build more dialogue between the HMR industry and the wider community is timely given the ‘licence to practice’ issues and questioned trust that applies currently somewhat both to science and to the charitable sector. This interest in improving HMR philanthropy also coincides with the launch last year by the Federal Government of Nonprofit Australia Limited (NAL), a group currently assessing infrastructure improvements to the charitable sector. History suggests no one will create this change if Research Australia does not. However, interest in change exists in various quarters. For Research Australia to successfully change the culture of Australian HMR giving, the process will drive the outcomes. Obviously stakeholder buy-in and partners will be needed and the ultimate blueprint for greater philanthropic HMR funding here will not be this document. Instead it will be the one that wears the handprint and ‘mindprint’ of the many architects and implementers interested in promoting HMR philanthropy, from philanthropists to nonprofit peaks to government policy arms. As the African proverb says, ‘If you want to go fast, go alone; but if you want to go far, go with others’.

Supervising practice based research

Practice based research appears to have emerged within several Higher Education agendas including the professional doctorates and the teacher as researcher. One way of thinking about this methodological approach is to consider its research paradigm – a practice based epistemology, and from this perspective to consider what special application to research supervision the paradigm invites. Within a “supervision as pedagogy” agenda these applications can be considered as pedagogies. This paper has been written in the style of practice based research, drawing on the author’s own experiences of supervising students undertaking practice based research. It adopts a position that research supervision is pedagogy and draws on the model of ‘Productive Pedagogies” to articulate strategies to help novice research students develop a research proposal.

Do research thesis examiners need training? : practitioner stories

We are thesis examiners within the Australian academic system who formed a “community of practice” to try to resolve some of the issues we were facing. Stories of examiners reflecting on and examining their own practice are a notable silence in the higher degree research literature. In this study we have adopted a storytelling inquiry method that involved telling our practitioner stories, firstly to each other and then to a wider audience through this paper. We then identified issues that we believe are relevant to other thesis examiners. We have also found that engaging in a “community of practice” is itself a valuable form of examiner professional development. Key Words: Thesis Examiner Training, Storytelling, and Practitioner Research

Building research capacity in the nursing workforce : the design and evaluation of the nurse researcher role

Objectives: The Nurse Researcher Project (NRP) was initiated to support development of a nursing research and evidence based practice culture in Cancer Care Services (CCS) in a large tertiary hospital in Australia. The position was established and evaluated to inform future directions in the organisation.---------- Background: The demand for quality cancer care has been expanding over the past decades. Nurses are well placed to make an impact on improving health outcomes of people affected by cancer. At the same time, there is a robust body of literature documenting the barriers to undertaking and utilising research by and for nurses and nursing. A number of strategies have been implemented to address these barriers including a range of staff researcher positions but there is scant attention to evaluating the outcomes of these strategies. The role of nurse researcher has been documented in the literature with the aim to provide support to nurses in the clinical setting. There is, to date, little information in relation to the design, implementation and evaluation of this role.---------- Design: The Donabedian’s model of program evaluation was used to implement and evaluate this initiative.---------- Methods: The ‘NRP’ outlined the steps needed to implement the nurse researcher role in a clinical setting. The steps involved the design of the role, planning for the support system for the role, and evaluation of outcomes of the role over two years.---------- Discussion: This paper proposes an innovative and feasible model to support clinical nursing research which would be relevant to a range of service areas.---------- Conclusion: Nurse researchers are able to play a crucial role in advancing nursing knowledge and facilitating evidence based practice, especially when placed to support a specialised team of nurses at a service level. This role can be implemented through appropriate planning of the position, building a support system and incorporating an evaluation plan.

Australian pelvic floor questionnaire : a validated interviewer-administered pelvic floor questionnaire for routine clinic and research

The aim of this study was to design and validate an interviewer-administered pelvic floor questionnaire that integrates bladder, bowel and sexual function, pelvic organ prolapse, severity, bothersomeness and condition-specific quality of life. Validation testing of the questionnaire was performed using data from 106 urogynaecological patients and a separately sampled community cohort of 49 women. Missing data did not exceed 2% for any question. It distinguished community and urogynaecological populations regarding pelvic floor dysfunction. The bladder domain correlated with the short version of the Urogenital Distress Inventory, bowel function with an established bowel questionnaire and prolapse symptoms with the International Continence Society prolapse quantification. Sexual function assessment reflected scores on the McCoy Female Sexuality Questionnaire. Cronbach’s α coefficients were acceptable in all domains. Kappa coefficients of agreement for the test–retest analyses varied from 0.5 to 1.0. The interviewer-administered pelvic floor questionnaire assessed pelvic floor function in a reproducible and valid fashion in a typical urogynaecological clinic.

The properties of the international classification of the external cause of injury when used as an instrument for injury prevention research

Objective: To demonstrate properties of the International Classification of the External Cause of Injury (ICECI) as a tool for use in injury prevention research. Methods: The Childhood Injury Prevention Study (CHIPS) is a prospective longitudinal follow up study of a cohort of 871 children 5–12 years of age, with a nested case crossover component. The ICECI is the latest tool in the International Classification of Diseases (ICD) family and has been designed to improve the precision of coding injury events. The details of all injury events recorded in the study, as well as all measured injury related exposures, were coded using the ICECI. This paper reports a substudy on the utility and practicability of using the ICECI in the CHIPS to record exposures. Interrater reliability was quantified for a sample of injured participants using the Kappa statistic to measure concordance between codes independently coded by two research staff. Results: There were 767 diaries collected at baseline and event details from 563 injuries and exposure details from injury crossover periods. There were no event, location, or activity details which could not be coded using the ICECI. Kappa statistics for concordance between raters within each of the dimensions ranged from 0.31 to 0.93 for the injury events and 0.94 and 0.97 for activity and location in the control periods. Discussion: This study represents the first detailed account of the properties of the ICECI revealed by its use in a primary analytic epidemiological study of injury prevention. The results of this study provide considerable support for the ICECI and its further use.

Does research into sensitive areas do harm? Experiences of research participation after a child’s diagnosis with Ewing’s Sarcoma

Objective: To investigate family members’ experiences of involvement in a previous study (conducted August 1995 to June 1997) following their child’s diagnosis with Ewing’s sarcoma. Design: Retrospective survey, conducted between 1 November and 30 November 1997, using a postal questionnaire. Participants: Eighty-one of 97 families who had previously completed an in-depth interview as part of a national case–control study of Ewing’s sarcoma. Main outcome measures: Participants’ views on how participation in the previous study had affected them and what motivated them to participate. Results: Most study participants indicated that taking part in the previous study had been a positive experience. Most (n = 79 [97.5%]) believed their involvement would benefit others and were glad to have participated, despite expecting and finding some parts of the interview to be painful. Parents whose child was still alive at the time of the interview recalled participation as more painful than those whose child had died before the interview. Parents who had completed the interview less than a year before our study recalled it as being more painful than those who had completed it more than a year before. Conclusions: That people suffering bereavement are generally eager to participate in research and may indeed find it a positive experience is useful information for members of ethics review boards and other “gatekeepers”, who frequently need to determine whether studies into sensitive areas should be approved. Such information may also help members of the community to make an informed decision regarding participation in such research.

Social Participation of Community Dwelling Stroke Survivors [Published Abstract: From the Quality of Care and Outcomes Research in Cardiovascular Disease and Stroke Conference 2009]

Disability following a stroke can impose various restrictions on patients’ attempts at participating in life roles. The measurement of social participation, for instance, is important in estimating recovery and assessing quality of care at the community level. Thus, the identification of factors influencing social participation is essential in developing effective measures for promoting the reintegration of stroke survivors into the community. Data were collected from 188 stroke survivors (mean age 71.7 years) 12 months after discharge from a stroke rehabilitation hospital. Of these survivors, 128 (61 %) had suffered a first ever stroke, and 81 (43 %) had a right hemisphere lesion. Most (n = 156, 83 %) were living in their own home, though 32 (17 %) were living in residential care facilities. Path analysis was used to test a hypothesized model of participation restriction which included the direct and indirect effects between social, psychological and physical outcomes and demographic variables. Participation restriction was the dependent variable. Exogenous independent variables were age, functional ability, living arrangement and gender. Endogenous independent variables were depressive symptoms, state self-esteem and social support satisfaction. The path coefficients showed functional ability having the largest direct effect on participation restriction. The results also showed that more depressive symptoms, low state self-esteem, female gender, older age and living in a residential care facility had a direct effect on participation restriction. The explanatory variables accounted for 71% of the variance in explaining participation restriction. Prediction models have empirical and practical applications such as suggesting important factors to be considered in promoting stroke recovery. The findings suggest that interventions offered over the course of rehabilitation should be aimed at improving functional ability and promoting psychological aspects of recovery. These are likely to enhance stroke survivors resume or maximize their social participation so that they may fulfill productive and positive life roles.

QUT Medical Engineering Research Facility (MERF) annual report 2009

DIRECTOR’S OVERVIEW by Professor Mark Pearcy This report for 2009 is the first full year report for MERF. The development of our activities in 2009 has been remarkable and is testament to the commitment of the staff to the vision of MERF as a premier training and research facility. From the beginnings in 2003, when a need was identified for the provision of specialist research and training facilities to enable close collaboration between researchers and clinicians, to the realisation of the vision in 2009 has been an amazing journey. However, we have learnt that there is much more that can be achieved and the emphasis will be on working with the university, government and external partners to realise the full potential of MERF by further development of the Facility. In 2009 we conducted 28 workshops in the Anatomical and Surgical Skills Laboratory providing training for surgeons in the latest techniques. This was an excellent achievement for the first full year as our reputation for delivering first class facilities and support grows. The highlight, perhaps, was a course run via our video link by a surgeon in the USA directing the participants in MERF. In addition, we have continued to run a small number of workshops in the operating theatre and this promises to be an avenue that will be of growing interest. Final approval was granted for the QUT Body Bequest Program late in 2009 following the granting of an Anatomical Accepting Licence. This will enable us to expand our capabilities by provide better material for the workshops. The QUT Body Bequest Program will be launched early in 2010. The Biological Research Facility (BRF) conducted over 270 procedures in 2009. This is a wonderful achievement considering less then 40 were performed in 2008. The staff of the BRF worked very hard to improve the state of the old animal house and this resulted in approval for expanded use by the ethics committees of both QUT and the University of Queensland. An external agency conducted an Occupational Health and Safety Audit of MERF in 2009. While there were a number of small issues that require attention, the auditor congratulated the staff of MERF on achieving a good result, particularly for such an early stage in the development of MERF. The journey from commissioning of MERF in 2008 to the full implementation of its activities in 2009 has demonstrated the potential of this facility and 2010 will be an exciting year as its activities are recognised and further expanded building development is pursued.

An examination of the knowledge barriers in participatory design and the prospects for embedded research

Participatory design has the moral and pragmatic tenet of including those who will be most affected by a design into the design process. However, good participation is hard to achieve and results linking project success and degree of participation are inconsistent. Through three case studies examining some of the challenges that different properties of knowledge - novelty, difference, dependence - can impose on the participatory endeavour we examine some of the consequences to the participatory process of failing to bridge across knowledge boundaries - syntactic, semantic, and pragmatic. One pragmatic consequence, disrupting the user's feeling of involvement to the project, has been suggested as a possible explanation for the inconsistent results linking participation and project success. To aid in addressing these issues a new form of participatory research, called embedded research, is proposed and examined within the framework of the case studies and knowledge framework with a call for future research into its possibilities.

Airborne systems laboratory for automation research

This paper presents an Airborne Systems Laboratory for Automation Research. The Airborne Systems Laboratory (ASL) is a Cessna 172 aircraft that has been specially modified and equipped by ARCAA specifically for research in future aircraft automation technologies, including Unmanned Airborne Systems (UAS). This capability has been developed over a long period of time, initially through the hire of aircraft, and finally through the purchase and modification of a dedicated flight-testing capability. The ASL has been equipped with a payload system that includes the provision of secure mounting, power, aircraft state data, flight management system and real-time subsystem. Finally, this system has been deployed in a cost effective platform allowing real-world flight-testing on a range of projects.

Teachers’ attitudes toward reporting child sexual abuse : problems with existing research leading to new scale development

This paper details a systematic literature review identifying problems in extant research relating to teachers’ attitudes towards reporting child sexual abuse, and offers a model for new attitude scale development and testing. Scale development comprised a five-phase process grounded in contemporary attitude theories including: a) developing the initial item pool; b) conducting a panel review; c) refining the scale via an expert focus group; d) building content validity through cognitive interviews; e) assessing internal consistency via field testing. The resulting 21-item scale displayed construct validity in preliminary testing. The scale may prove useful as a research tool, given the theoretical supposition that attitudes may be changed with time, context, experience, and education. Further investigation with a larger sample is warranted.

Coordinated research support services at Queensland University of Technology, Australia

Queensland University of Technology (QUT) is a large multidisciplinary university located in Brisbane, Queensland, Australia. QUT is increasing its research focus and is developing its research support services. It has adopted a model of collaboration between the Library, High Performance Computing and Research Support (HPC) and more broadly with Information Technology Services (ITS). Research support services provided by the Library include the provision of information resources and discovery services, bibliographic management software, assistance with publishing (publishing strategies, identifying high impact journals, dealing with publishers and the peer review process), citation analysis and calculating authors’ H Index. Research data management services are being developed by the Library and HPC working in collaboration. The HPC group within ITS supports research computing infrastructure, research development and engagement activities, researcher consultation, high speed computation and data storage systems , 2D/ 3D (immersive) visualisation tools, parallelisation and optimization of research codes, statistics/ data modeling training and support (both qualitative and quantitative) and support for the university’s central Access Grid collaboration facility. Development and engagement activities include participation in research grants and papers, student supervision and internships and the sponsorship, incubation and adoption of new computing technologies for research. ITS also provides other services that support research including ICT training, research infrastructure (networking, data storage, federated access and authorization, virtualization) and corporate systems for research administration. Seminars and workshops are offered to increase awareness and uptake of new and existing services. A series of online surveys on eResearch practices and skills and a number of focus groups was conducted to better inform the development of research support services. Progress towards the provision of research support is described within the context organizational frameworks; resourcing; infrastructure; integration; collaboration; change management; engagement; awareness and skills; new services; and leadership. Challenges to be addressed include the need to redeploy existing operational resources toward new research support services, supporting a rapidly growing research profile across the university, the growing need for the use and support of IT in research programs, finding capacity to address the diverse research support needs across the disciplines, operationalising new research support services following their implementation in project mode, embedding new specialist staff roles, cross-skilling Liaison Librarians, and ensuring continued collaboration between stakeholders.