Consumer-driven approach to determining health research priorities: what matters most to people living in rural Australia?

Organisation/s: OTHER

Summary: Rural, regional and remote communities face unique health challenges, including limited access to health care, workforce shortages, and higher disease burden. Consumer and community involvement is essential for addressing real-world health needs and fostering equity, yet its role in shaping research priorities remains largely underexplored, particularly in rural contexts. This study aims to identify consumer priorities for rural health research in Australia and to describe the process and learnings of a novel approach to promoting involvement of rural consumers in health research. Citation: Catapan SC, Nasir BF, Alexander T, Bell A, Maxwell J, Jenkinson B, MacAskill W, Taylor J, Christoffersen A, Gavioli L, Smith AC, Russell T.  Consumer-driven approach to determining health research priorities: what matters most to people living in rural Australia? Rural and Remote Health 2026; 26: 9949. https://doi.org/10.22605/RRH9949

Mind the gap: is it time to invest in embedded researchers in regional, rural and remote health services to address health outcome discrepancies for those living in rural, remote and regional areas?

Organisation/s: OTHER

Summary: Research capacity building in healthcare works to generate and apply new knowledge to improve health outcomes; it creates new career pathways, improves staff satisfaction, retention and organisational performance. While there are examples of investment and research activity in rural Australia, overall, rural research remains under-reported, undervalued and under-represented in the evidence base. This is particularly so in primary care settings. This lack of contextual knowledge generation and translation perpetuates rural–metropolitan health outcome disparities. Through greater attention to and investment in building research capacity and capability in our regional, rural and remote health services, these issues may be partially addressed. It is proposed that it is time for Australia to systematically invest in rurally focussed, sustainable, embedded research capacity building. Aust J Prim Health (2019) 25 (2): 104–107. https://doi.org/10.1071/PY18201

Implementing Teletrials to Improve Equity of Access for Regional Patients with Cancer: Report from the Victorian Teletrial Collaborative

Organisation/s: OTHER

Summary: The Victorian Teletrial Collaborative – a partnership between the Regional Trials Network-Victoria, AlfredHealth TrialHub, VCCC Alliance, and Safer Care Victoria – has developed a consistent approach to delivering teletrials across Victoria, informing national and international efforts to address equity of access to clinical trials. The original three organisations joined forces in 2022 under a collective impact model, with Safer Care Victoria joining in 2024, for the greater benefit of priority populations including rural and regional patients, outer metropolitan patients, older Australians, First Nations peoples and those with less common cancers. The group delegated roles and responsibilities by organisation to enhance the collective impact, efficiency, and timeliness of teletrials in Victoria. The joint publication, Implementing Teletrials to Improve Equity of Access for Regional Patients With Cancer: Report From the Victorian Teletrial Collaborative, has now been published in the Asia-Pacific Journal of Clinical Oncology.

Vetting in Health Research – Inclusion Framework (VeHRIF): A new tool to assess inclusivity of capacity building resources for health researchers

Organisation/s: OTHER

Summary: The Vetting in Health Research – Inclusion Framework (VeHRIF) is a newly developed tool designed to assess the inclusivity of capacity building resources for health researchers. It was created in response to the lack of existing frameworks that could appropriately evaluate a wide range of research tools and resources for their relevance, accessibility, impact and engagement with community. Developed collaboratively by the Health Research for All (HRFA) team and partners, VeHRIF provides a structured and scalable approach to vetting resources using four inclusive research principles: Evidence-based, Relevant and Accessible, Engagement with Community, and Impact on Practice. VeHRIF is intended for use by both researchers and consumers to ensure that resources featured on the HRFA hub meet standards of inclusivity and support better practices in research. Its flexible design allows it to be applied across various research types and diversity domains, and its Likert scale-based assessment enables nuanced evaluation. The tool will continue to evolve through user feedback and testing, with future adaptations planned to facilitate the assessment of resources that are not fully accessible or require context-specific criteria.

Impacts of a Clinical Quality Registry on Lung Cancer Quality measures: A retrospective observational study of the Victorian Lung Cancer Registry

Organisation/s: OTHER

Summary: Highlights • Clinical Quality Registries describe the appropriateness and effectiveness of delivered care • We identified significant unwarranted clinical variation in Victorian lung cancer quality indicators • We observed rapid translation of best evidence-based practice molecular investigation to clinical care • The Victorian Lung Cancer Registry observed significant improvement in clinical documentation and MDM presentation • Address to psycho-social distress screening remains a challenging objective

Implementation of Timely Referral to Outpatient Palliative Care Services in Regional Victoria: is it possible to improve outcomes?

Organisation/s: Albury Wodonga Health, Border Medical Oncology & Heamatology, Border Medical Oncology Research Unit

Research project commencement date: 04/04/2024

Summary: Timely Referral to Outpatient Palliative Care Services in Regional Victoria (TROPICAL-VIC) is a 3-year Victorian Cancer Agency funded project aimed at bringing best practice palliative care to people diagnosed with advanced cancer in the regions. People with advanced cancer have considerable physical and psychological needs. Studies of Victorian patients who died with cancer reveal an average of three multiday hospital admissions and 29 days in hospital following a diagnosis of incurable disease. Most will die in hospital (68%) and 62% will have two or more acute hospital admissions in the last 30 days of life. For many, this acute hospital care at the end of life does not reflect their preferences and the high levels of healthcare usage experienced have significant cost implications. There is now a mature evidence base demonstrating the effectiveness of early referral to palliative care for patients with cancer including: improved quality of life, improved mood, improved survival outcomes, reduction in emergency presentations fewer emergency presentations and hospital admissions at the end of life, increased likelihood of death at home (the preferred option of most), and savings of palliative care of up to 25% of total healthcare expenditure (compared to usual care). Despite these benefits, many patients do not access palliative care until very late, if at all. To reduce existing variation in care, and facilitate access to early palliative care, new models and demonstration projects are required. Data on the success or otherwise of early referral to palliative care in rural and regional areas is particularly scant. Rurality lends another layer to the complexity of palliative care provision, given shortages of allied health and psychological services, geographical isolation and the fragmentation of palliative care services across service areas and borders. The TROPICAL-Vic project aims to enhance the current offerings of palliative care in the region, and to contribute to the evidence base by describing the process of co-designing the implementation of an adapted model of early referral to palliative care in a regional setting.

“It’s a reasonable gamble” – rural residents’ experience participating in cancer clinical trials at a single rural trial unit

Organisation/s: Bendigo Health

Summary:   Abstract Background We conducted a qualitative study to examine what factors influence rural-residing people with cancer to participate in cancer clinical trials (CCT) and what factors influence their retention in CCT. Methods Purposive sampling was used to recruit participants from a regional cancer centre in Victoria, Australia, to participate in a semi-structured interview. Eligible participants were ≥ 18 years of age at the time of cancer diagnosis, newly consented to a clinical trial (< 1 year) or have been a trial participant for ≥ 1 year, lived in a non-metropolitan area classified within the Monash Modified (MM) Model 2–7 and able to provide informed consent. Thematic analysis was used to analyse the interview data. Results Seventeen participants were interviewed; 10 identified as female and seven as male. Participant’s ages ranged from 52 to 77 years, with a median age of 62 years. Eight participants had been on a CCT for ≤ 1 and 10 for ≥ 1 year. Factors that influenced their decision to participate in a CCT included trust and confidence in clinical trial staff, exposure to and trust in the experiences of cancer peers, altruism, low-risk trials and local access to trials. The factors influencing their decision to remain in a CCT included balancing the benefits and burdens of the trial, having no doubts about participating despite knowing the risks and seeing the personal benefits of participating in a CCT. Conclusion Our study shows that trust-based relationships, peer support, and altruism encourage rural residents to participate in CCT. To improve access to CCT for rural residents, a multi-faceted approach involving clinicians, health services, trial sponsors and policymakers is needed. These approaches must promote and facilitate the inclusion of diverse populations, prioritise CCT participation, and inform patients of CCT opportunities. We must recognise the knowledge and expertise of rural patients and caregivers and ensure they are involved as co-designers of future CCTs. Keywords Cancer clinical trials, Rural health, Equity, Access

Real-world implementation of geriatric assessment in cancer care among older adults: the role of implementation science frameworks

Organisation/s: Care Economy Research Institute

Summary:

Abstract

Establishment of a Research Unit in Colac, a medium Rural Town: An Update on Progress and Guidance for Rural Health Service Research Strategy Development

Organisation/s: Colac Area Health Research Unit

Summary: Rural health services have not had the same research opportunities as their metro counterparts. Our papers document how rural health services can have research units as part of their operations. Local research opportunities provide exciting career opportunities for the rural health workforce, along with improving patient and community care.      

Palliative care clinical trials research in regional settings: Green fields of opportunity

Organisation/s: 8 Regional Palliative Care Services

Summary: ReViTALISE Palliative Care Research Fellow Dr Miriam Ferres's publication was released in the Internal Medicine Journal recently. The publication, 'Palliative care clinical trials research in regional settings: Green fields of opportunity', highlights a baseline census conducted to establish the current research and clinical trial availability across eight participating regional palliative care services. The project is funded through the Australian Medical Research Future Fund.

Decentralized Clinical Trials as a New Paradigm of Trial Delivery to Improve Equity of Access

Organisation/s: Border Medical Oncology Research Unit

Summary: Importance The need to maintain clinical trial recruitment during the COVID-19 pandemic has precipitated the rapid uptake of digital health for the conduct of clinical trials. Different terms are used in different jurisdictions and clinical contexts, including digital trials, networked trials, teletrials (TT), and decentralized clinical trials (DCT) with a need to agree to terms. Observations This clinical care review summarized publications and grey literature, including government policies for the safe conduct of clinical trials using digital health. It compares 2 frequently used methodologies, DCT and TT, first developed before the COVID-19 pandemic by trialists and stakeholders in Australia to improve access to cancer clinical trials for geographically dispersed populations. TT uses a networked approach to implement clinical trials to share care between facilities and uses an agreement between sites or a supervision plan to improve governance and safety. Government regulators have adapted existing regulations and invested in the rollout of the TT model. The term DCT emerged in the northern hemisphere and has been the subject of guidance from regulatory agencies. DCT uses digital health to deliver care in non-traditional sites, such as participants’ homes, but does not mandate a networked approach between health facilities or require a supervision plan to be in place. Conclusions and Relevance TT can be considered as a specific type of DCT with several potential advantages, including upskilling across a network. DCT is a new paradigm for the use of digital health in the safe conduct of clinical trials and is a transformative issue in cancer care, addressing disparities in access to clinical trials and improving clinical outcomes. Citation JAMA Oncol. 2024;10(4):526-530. doi:10.1001/jamaoncol.2023.6565

Telehealth in oncology: a cost analysis to evaluate the financial impact of implementing regional trial hubs within a phase 3 cancer clinical trial

Organisation/s: Border Medical Oncology Research Unit and Regional Trials Network Victoria

Summary: This cost analysis, from a societal perspective, compared the cost difference of a networked teletrial model (NTTM) with four regional hubs versus conventional trial operation at a single metropolitan specialist centre. The Australian phase 3 cancer interventional randomised controlled trial included 152 of 328 regional participants (patient enrolment 2018–2021; 6-month primary end point). The NTTM significantly reduced (AU$2155 per patient) patient travel cost and time and lost productivity. https://onlinelibrary.wiley.com/doi/10.1111/imj.16292

Design and implementation characteristics of research training for rural health professionals: a qualitative descriptive study

Organisation/s: Grampians Health

Research project commencement date: 29/11/2019

Summary: Background: Research capacity and capability of rural health professionals is essential to the delivery of evidence-based care and for informing strategies to address rural health inequities. Effective implementation of research education and training is fundamental to building rural health professional research capacity and capability. The aim of this qualitative descriptive study was to identify characteristics of the design and implementation of current research training for rural health professionals in Victoria, Australia, to inform a future model for rural health professional research capacity and capability building. Results: Participants suggested that research training varied in quality and relevance to rural health professionals. Training costs and lack of tailoring to the rural context were key barriers, whereas experiential learning and flexible modes of delivery enabled training uptake. Health service and government policies, structures, and processes both enabled or stifled implementation opportunities, with rural health professional networks from different regions offering capacity for research training development, and government departmental structures hampering training coordination. Tension between research activities and clinical practice, and health professional knowledge and beliefs, shaped the delivery of training programs. Conclusions: To optimise research training for rural health professionals and increase the quality and quantity of relevant rural health research, a systematically planned, implemented, and resourced region-wide research training model is required. Citation: https://bmcmededuc.biomedcentral.com/articles/10.1186/s12909-023-04169-5#Ack1

The importance of ‘place’ and its influence on rural and remote health and well-being in Australia

Summary: Butterworth et al 2024 This article explores the crucial role of ‘place’ as an ecological, social and cultural determinant of health and well-being, with a focus on the benefits and challenges of living rurally and remotely in Australia. The health system, including health promotion, can contribute actively to creating supportive environments and places that foster health and well-being among individuals residing in rural and remote locations. For First Nations peoples, living on Country, and caring for Country and its people, are core to Indigenous worldviews, and the promotion of Aboriginal and Torres Strait Islander health and well-being. Their forced removal from ancestral lands has been catastrophic. For all people, living in rural and remote areas can deliver an abundance of the elements that contribute to a ‘liveable’ community, including access to fresh air, green and blue space, agricultural employment, tight-knit communities, a sense of belonging and identity, and social capital. However, living remotely also can limit access to employment opportunities, clean water, affordable food, reliable transport, social infrastructure, social networks and preventive health services. ‘Place’ is a critical enabler of maintaining a healthy life. However, current trends have led to a reduction in local services and resources, and increased exposure to the impacts of climate change.  

Surgery for breast cancer – Barriers and enablers to engagement with prehabilitation.

Organisation/s: Barwon Health

Summary: Breast cancer is the most common cancer in Australia. Unfortunately, breast surgery can commonly result in loss of shoulder and neck movement, increased pain, and limited ability to participate in everyday life. Actively engaging in clinician-led exercise before surgery for breast cancer (prehabilitation) offers an opportunity to improve fitness, reduce long-term issues with shoulder movement, arm strength, and pain. Despite established benefits, the Barwon Health prehabilitation service was poorly utilised. This research aims to investigate why, with the goal of shaping a service that facilitates more people to access prehabilitation and potential improvements in patient outcomes relating to fitness, neck and upper limb pain, and dysfunction.

The rapid adoption of telehealth by a regional community-based palliative care service due to COVID-19: Patient and Health Care Professional perspectives and opportunities for service enhancement

Organisation/s: Barwon Health

Research project commencement date: 01/01/2020

Summary:

Background/objective: The COVID-19 pandemic has brought the use of telehealth to the fore, as many people have been unable to interact directly with healthcare professionals (HCP). For community palliative care (CPC) services, this has meant a sudden change from a predominantly face-to-face model of care to one that incorporates telehealth. Understanding patient and HCP experiences with telehealth and how telehealth compares to ‘usual’ care will be crucial in planning future CPC services.

Methodology: All patients of the Barwon Health CPC service between 1 April and 31 May 2020 were invited to complete a questionnaire evaluating their interactions with the palliative care service and specifically their involvement with telehealth consultations. Palliative care HCP who provided clinical services during the same time period were also surveyed.

Results/conclusion: Seventy-four patients (response rate 36%) and 22 HCP returned surveys. Both groups felt comfortable using telehealth, however, also encountered a range of issues when undertaking telehealth consultations. Despite reporting issues, the preference of both groups was for a CPC service model, which combined face-to-face and telehealth consultations. This study is one of the first to directly ask this question and as such provides useful guidance for health services when planning future CPC service models.

Associate Investigators: Anna Dowd, Jacqui White, Matthew Ely, Jill Carter

Dying at home: enablers and barriers

Organisation/s: Barwon Health

Research project commencement date: 01/01/2023

Summary:

Background: According to the Grattan Institute in 2014, 70% of Australians indicated a preference to die at home, however, only 14% of all deaths were at home.

Aims: To identify how patients can be supported to die at home if that is their preference.

Methods: A retrospective medical record audit of eligible Community Palliative Care (CPC) patients who indicated a wish to die at home was undertaken.

Findings: Out of a total of 114 patients, 74% indicated a preference to die at home. Of these, 66% achieved a home death, and most lived with a carer. Enablers for home death included family support, regular nursing visits and equipment. People who attended an emergency department in their last month of life, lived alone or were undergoing oncological treatment were more likely to die elsewhere.

Conclusion: A range of enablers and barriers to home death were found, with many of the enablers being factors that prevented hospital presentations

Citation: Int J Palliat Nurs. 2023 Jul 2;29(7):326-333. doi: 10.12968/ijpn.2023.29.7.326

Authors: Anna Dowd, Melanie Davies, Sarah Short, Ruth Morrison, Cheryl Spiller, Jill Carter, Peter Eastman

Empowering The Mind, Strategies for Coping with Cancer: a Low Out of Pocket Expense Pilot Program

Organisation/s: South West Health

Research project commencement date: February 2021

Summary: Receiving news of a cancer diagnosis has the potential to cause elevated distress for individuals which may manifest as a range of feelings including vulnerability, loss of control, anxiety, and depression, further compounded by the potential adverse effects of cancer treatments. Providing support to psychologically vulnerable patients is an important element of supportive cancer care. To date, there has been no specific program designed to address the psychological requirements of cancer patients in the South Western (SW) region of Victoria, other than private psychologist services which result in patients incurring high out-of-pocket expenses if not covered by private health insurance. In addition, the availability of psychologists in the SW region of Victoria fails to meet service demand. A feasibility study was undertaken to assess the benefit of conducting a low-cost program incorporating six group therapy sessions delivered by a clinical psychologist aimed at providing tools and coping strategies for patients experiencing a cancer diagnosis.It is proposed that group therapy sessions could be an alternative to the lack of psychology services for cancer patients in SW Victoria at low out-of-pocket expense.