Palliative Nexus | Professor Jennifer Philip

Informal caregivers disproportionately carry the burden of caring for patients with cancer, providing an estimated 75-90% of home-based care. Current economic evaluations of health services and interventions are based on the benefits to the formal healthcare system, while the financial impact on informal caregivers is routinely overlooked. To date, no standardised instrument exists to understand the economic impact of informal caregiving for cancer patients at the end-of-life.

This mixed methods study aims to co-design a questionnaire that comprehensively captures the resources incurred by caregivers for cancer patients at the end-of-life, and to assess its feasibility, acceptability and face validity.  This work is overseen and co-designed with a community advisory group involving carers (current and bereaved), clinicians and health economists.

Worldwide, there is an increasing older prison population. People aged 50 or over make up 15% of the Australian prison population. This represents an increase of 84% in this age group between the years 2005 to 2015. The high incidence of multiple morbidity and the premature ageing within the prison setting mean that more and more people will face their end of life in custody. Prisons are designed and built with a younger, fit population in mind. The challenge of providing care to those people facing advanced cancer and other illnesses is very significant and escalating.

We have adopted a mixed methods approach to understanding the barriers to best care and also exploring opportunities to improve care for people facing end of life while incarcerated. Working with our clinical partners, the outcomes of this research is now being formulated into interventions and approaches that are being translated into care.

The National Pancreatic Cancer Roadmap, developed by Cancer Australia, details a set of priorities towards improving care and outcomes for people affected by pancreatic cancer.  This project undertaken for Cancer Australia, led by Palliative Nexus in collaboration with investigator partners, aims to develop:

• pathways to timely pain management and early palliative care,
• Associated clinical guidance, education for health professionals, information for patients, &
• digital and implementation recommendations to support the Roadmap.

Working with experts and stakeholders from across the country, a longitudinal iterative co-production methodology informed by program logic and deliberative dialogue approaches will guide participant engagement, assess data from evidence reviews and participant experiences, and develop and achieve consensus on project outputs. Key stakeholders include clinicians (pain, palliative care, oncology, general practitioners, radiologists and gastroenterologists), patients, carers, community organisations, culturally and linguistically diverse, and Aboriginal and Torres Strait Islander peoples from all states and regions.

Based on background work focused upon improving outcomes for Aboriginal people with Advanced cancer and guided by a Cultural community Advisory group (comprised of First Nations cancer survivors, Aboriginal health workers, cancer professionals including Professors Gail Garvey and Jenny Phillip as well as representatives from WCMICS and VACCHO), a clear recommendation for establishing a First Nations Cancer Care Coordinator was made.

Establishing and implementing this is project role was funded by the Western Central Melbourne Integrated Cancer Service (WCMICS).

The role is being implemented at Royal Melbourne Hospital with patient and family focused care delivery as well as working with community organisations to facilitate optimal cultural support of people receiving cancer care across the illness course.

In 2024, Professor Jennifer Philip was awarded a Victorian Cancer Agency grant to lead a study offering early palliative care for people with high grade glioma. This further tests the  Care Plus model as it is  implemented for people with brain cancer using face-to-face and telehealth models to ensure access for all Victorians.

The outcomes of this study will focus on the impact of the model of care itself upon quality of care, as well as the effectiveness of different implementation strategies across telehealth platforms and to regional patients.

Working with the VCCC and in collaboration with clinical partners (Royal Melbourne, Peter MacCallum and St Vincent’s Hospitals), the Care Plus model will be extended to involve delivery to people with lung, colorectal cancer or sarcoma. This will be undertaken in partnership with two regional centres – La Trobe and Albury-Wodonga Health.

The outcomes of this study will also focus upon impact on health service use and the effective implementation strategies to bring about system level change.  Access and equity for achieving best care of regionally based people with cancer underpins this project.

Voices for Palliative Care is a group of engaged consumers with lived experience in palliative care, committed to fostering meaningful collaboration and partnership in research activities, contribution to service planning and delivery, and community-driven advocacy. Ensuring palliative care is relevant to and addressing the needs of both patients and their carers is essential, and research which seeks to improve experiences of palliative care must be informed by, and undertaken in collaboration with those care recipients (and providers).

Voices for Palliative Care offers a platform for community members  to collaborate and mentor each other and to partner with researchers, either collectively or individually, in order to enrich their studies and projects. Uniquely, the Voices members are actively involved in co-designing research which seeks to evaluate and measure the impact of their input into research initiatives.

While there is mature evidence to support early palliative care integration into cancer care, public views and misperceptions mean palliative care is often delayed if it is engaged with at all. Yet when people hear about the areas where palliative care assist, they are often open to referral.

The Choice Project is testing different methods of providing information to the general public and to people with cancer, using videos, story telling and the presentation of evidence to understand what is the most accessible and effective way to hear about options for care when cancer doesn’t go away.

OPPtic is a pilot feasibility study establishing and interrogating a clinical opioid pharmacogenomics database in palliative care.

Many people with cancer will require pain relief with opioids at some time in their illness. They are highly effective for most, but a group of people develop significant side effects. Currently, there is no means of predicting who will get these side effects.

This study seeks to elucidate the clinical, biological and genetic factors that influence side effects and efficacy for the opioid drug class in a palliative care population of cancer patients. The goal is to personalise opioid prescriptions to improve pain relief.

People with advanced illness frequently experience significant symptoms which often fluctuate and may worsen. Many people are uncertain what to do if symptoms change, how to seek help, or who to contact, and many will wait until their next scheduled doctors appointment maybe leading to distress while waiting, or even the need for an emergency department visit.

The PARTNER study has established a program of remote symptom monitoring system for people receiving palliative care thereby enabling them to alert their clinical teams of escalating symptoms using their smart phone. The pilot implementation study conducted at Royal Melbourne and Peter MacCallum Hospitals seeks to establish the feasibility and acceptability of the processes and systems, as well as document the impact upon patient care and experience.