Equity in Health and Wellbeing Research Program

Vulnerable and disadvantaged populations face significant challenges in achieving good health. As a result, this population experiences earlier death and more complications from illness compared to others.  

It is critical that we develop a better understanding of the factors that influence health, and work to intervene across both the community and clinical health settings to promote equity in health and wellbeing outcomes.  

Our work focuses on vulnerable and potentially vulnerable population groups. These include those with chronic and complex health conditions, communities of low socioeconomic status, Aboriginal and Torres Strait Islander people, people residing in regional and remote areas, older Australians, and LGBTIQ+ people.

Our work crosses a range of health areas including preventive healthcare, chronic disease, cancer, end-of-life care, dementia, substance abuse, and mental health.

Aboriginal and Torres Strait Islander health 

Aboriginal and Torres Strait Islander people (hereafter respectfully referred to as Aboriginal people) are the Indigenous people of Australia. Aboriginal people comprise hundreds of distinct groups that have their own languages, histories and cultural traditions. Aboriginal and Torres Strait Islander people make up approximately 3.3% of the total Australian population. However, as a result of the ongoing impacts of colonisation, Aboriginal people continue to have poorer overall health and wellbeing and a shorter life expectancy compared to non-Aboriginal Australians.

Aboriginal and Torres Strait Islander people born in 2015 - 2017, life expectancy was estimated to be 71.6 years of age for males, and 75.6 years of age for females. This means that Aboriginal and Torres Strait Islander people will live approximately eight to nine years less than non-Aboriginal males and females. Other inequalities between Aboriginal and Torres Strait Islander peoples and non-Indigenous Australians relate to chronic and communicable diseases, infant health, and mental health. It's critical that meaningful research is conducted to achieve Aboriginal and Torres Strait Islander health equality.  

The new National Aboriginal and Torres Strait Islander Health Plan sets the policy direction for Aboriginal and Torres Strait Islander health and wellbeing and will guide the development of all Aboriginal and Torres Strait Islander health policies, programs, and initiatives over the next ten years. 

Chronic Disease and Complex Health Conditions

Approximately 1 in 2 Australians (47%) have a chronic disease.

These are conditions that last 12 months or more and that limit the activities of daily living or require ongoing medical attention or both. Chronic diseases such as heart disease, cancer, and diabetes are the leading causes of death and disability in Australia, and cost $38 billion in annual healthcare costs.

More people are dealing with multiple chronic diseases and complex chronic diseases. As such, we urgently need research into how to support community members and the health system with the prevention and treatment of the conditions. Our researchers have been funded to investigate a diverse range of issues within this field including:

  • Improving and maintaining outcomes for cancer survivors ($1.5M Cancer Council NSW)
  • Developing an intervention to support bowel cancer patients undergoing surgery ($306K NHMRC)
  • Developing an e-health innovation for stroke survivors ($254K NHMRC)
  • Preparing patients for potentially threatening medical procedures (2 PhD scholarships)
  • Investigating depression and alcohol misuse comorbidity (PhD $45K Australian Rotary Health)

Research of our program members has already been translated into practice to benefit the community including:

  • Improved clinical care for rheumatology patients in hospitals spanning 3 countries
  • A standardised approach to identify cognitive dysfunction

 

Older Australians 

Approximately 16% of the total Australian population is aged over 65 years. This proportion is expected to significantly increase to almost a quarter of all Australians by 2066.

Age is an important determinant of health, as it is often accompanied by an increased risk of declining health, functional limitations and disability. Supporting older Australians to age well is a key focus of our program. Our work recognises that older Australians are a diverse group of people of different ages, socioeconomic backgrounds, life experiences and lifestyles with different priorities for living well.  

Rural communities 

Australia comprises a land area of about 7.692 million square kilometres and is the sixth-largest country by land mass in the world.

Australians living in rural and remote areas of Australia outside of large cities can face unique challenges to achieving optimal health as a direct result of their geographic location. For example, on average, Australians living in rural and remote areas live shorter lives, have higher levels of disease and injury, and can struggle to access quality health services compared with Australians living in large cities. Our work focuses on addressing the unique health challenges experienced by Australians living in regional, rural, and remote areas.

Socio-economically disadvantaged

Socio-economic advantage and disadvantage can be defined as people’s access to material and social resources, and their ability to participate in society.

Whether measured by income, occupational grade, or educational attainment, individuals from socio-economically disadvantaged backgrounds are more likely to suffer adverse health outcomes, have overall poorer health and have higher levels of mortality compared with other individuals in society. The higher an individual’s socioeconomic position, the healthier they tend to be – a trend termed the ‘social gradient of health’. 

For example, compared with adults living in the highest socioeconomic areas, adults living in the lowest socioeconomic areas in 2018/19 were:

  • 1.6 times as likely to be obese
  • 1.3 times as likely to be insufficiently active 
  • 1.2 times as likely to have uncontrolled high blood pressure 
  • 3.6 times as likely to smoke daily

When compared with people living in the highest socioeconomic areas, people in the lowest socioeconomic areas in 2016–2020 were:

  • 2.6 times as likely to die from chronic obstructive pulmonary disease
  • 2.0 times as likely to die from lung cancer
  • 1.6 times as likely to die from coronary heart disease 
  • 1.3 times as likely to die from cerebrovascular disease 
  • 1.1 times as likely to die from dementia 

Our work recognises the health disparity experienced by people from socio-economically disadvantaged backgrounds. We aim to understand this disparity and test initiatives that may improve the health outcomes for this group.

LGBTIQ+ health

LGBTIQ+ Health is an emerging theme within our Equity in Health and Wellbeing Research Program. The NSW LGBTIQ+ Health Strategy 2022-2027 signals a significant commitment to improving the health and wellbeing of LGBTIQ+ people.

11 in 100 Australians identify as a sex or gender minority, and these communities experience significant health disparities.

Persistent stigma, discrimination, and exposure to violence have contributed to higher rates of emotional distress, harmful patterns of alcohol, smoking and drug use. Conversely, these communities exemplify models of resilience and are strong advocates for inclusion, human rights, and their own equity in healthcare.

Transgender people, binary and non-binary, experience unique barriers to accessing both routine healthcare and essential gender-affirming care. Gender-affirming care encompasses the range of health services that people may access to affirm their gender. Hunter New England LHD is the strategic hub for transgender health in NSW and delivers public community services at Maple Leaf House with multidisciplinary care for people <25 years; a service for people >25 years care is provided through the John Hunter Hospital department of Endocrinology and Sexual Health Clinics. These specialist services work closely with Primary Care using HealthPathways as a common resource. We have established this emerging theme to optimise the delivery of evidence-based care and improve outcomes for LGBTIQ+ people.

 

Program Leadership Team
Awards
  • Ama Ampofo won the 2022 Health and Behavior International Collaborative Award for her work in cervical cancer treatment and prevention in Ghana
  • Michelle Kennedy won the 2022 HMRI Early Career Researcher Award, and was a Finalist in the 2022 Research Australia Awards for her work in smoking cessation.
  • Katie Wynne and team won the Australian Council on Healthcare Standards 2022 Clinical Excellence and Patient Safety Award for their innovative approach to care for patients and carers living with advanced liver disease.
  • The ‘Queer Med Ed Project’ won the 2022 Equity, Diversity and Inclusion Award at the College of Health, Medicine and Wellbeing Staff Awards University of Newcastle 
  • ‘A Pathway to Transgender Health: a community model of care’  was a finalist at the 2017 HNELHD High Value Healthcare Awards 

2022 Academic Promotions:

  • Kristy Fakes was promoted to Lecturer/Research Academic
  • Carolyn Hullick was promoted to (Conjoint) Associate Professor
  • Michelle Kennedy was promoted to Associate Professor

 

Flagship Research Studies 

Aboriginal and Torres Strait Islander Health Research Studies

Addressing health and care needs of Aboriginal and Torres Strait Islander people living with dementia and their communities

NHMRC Targeted Research Grant, 2019 - 2024 

Many Aboriginal and Torres Strait Islander people living with dementia are not diagnosed in a timely manner or provided with the very best care.

This study is using a methodologically robust, cluster-randomised controlled trial to examine the effectiveness and cost-effectiveness of a community-based intervention in increasing the timely diagnosis of people living with dementia and the provision of best practice dementia care. Implemented in Aboriginal Community Controlled Health Services, we'll be testing the effectiveness of a new approach to care in reducing psychosocial distress for both the person living with dementia and their carer. The intervention is culturally appropriate and the development is guided by community consultation. The project also aims to help improve community understanding of dementia and older age. 

Increasing 715 Health Checks for Aboriginal and Torres Strait Islander clients in mainstream general practice 

NHMRC Targeted Research into Healthy Ageing of Aboriginal and Torres Strait Islander Peoples, 2019 - 2027 

Aboriginal and Torres Strait Islander people continue to experience a greater chronic disease burden compared to non-Indigenous Australians. Health Checks help to identify health risk factors before they become bigger health problems by providing an opportunity for prevention and early disease management. 715 Health Checks are available to all Aboriginal and Torres Strait Islander people once a year. Currently, not enough Aboriginal and Torres Strait Islander people are provided with a 715 Health Check.

This project will be conducted in two phases.

Phase One will explore mainstream general practices, including:

  • accuracy of identification and recording of Aboriginal and/or Torres Strait Islander status in the medical records, and
  • current rates of 715 Health Checks.

Phase Two will develop and test a range of care enhancement strategies to increase the proportion of Aboriginal and Torres Strait Islander clients attending mainstream general practice with an up-to-date 715 Health Check. The project will also explore the impact of the care enhancement strategies on provider adherence to best practice care and patient outcomes for a number of chronic conditions.

Building on existing processes implemented in the participating practices, care enhancement strategies will be tailored to the individual practices and the Aboriginal and Torres Strait Islander communities they serve.  

Murra Minya - Aboriginal experiences in the conduct of health research: the development of practical recommendations to enhance the uptake of ethical research guidelines 

NHMRC Ideas Grant, 2021 - 2025 

In Australia, Aboriginal and Torres Strait Islander health research continue to grow, with a significant amount of research undertaken in Aboriginal Community Controlled Health Services.

We know that ethical and high-quality research aids in addressing health disparities by informing policy and practice level change. What we don't know is how and if this is working to the benefit of Aboriginal and Torres Strait Islander people and communities.

Led by Aboriginal and Torres Strait Islander academics and communities, this study will develop new knowledge about how Aboriginal and Torres Strait Islander health research has been conducted and how it should be conducted from the perspective of Aboriginal and Torres Strait Islander communities, academics and governing bodies such as ethics committees. This project aims to:

  • systematically map the implementation of ethical guidelines and research principles for Aboriginal health research in Australia, and
  • provide data-based and community-informed principles and practices for conducting Aboriginal health and medical research.
Older Australians Research Studies

An Australian Community of practice in Research in Dementia (ACcORD) to improve health outcomes for people with dementia and their carers  

NHMRC Dementia Research Team Grant, 2015 - 2023 

Dementia has a huge impact on all aspects of life, not only for those diagnosed with the condition but also for their families.

Despite a large number of Australians living with dementia, more research is needed into the support, information, health care and service needs of those diagnosed with the condition and their families. The ACcORD project brings together an experienced multidisciplinary team from several universities to improve the health and quality of life of people with dementia and their carers.

This grant is funding a program of research across four key themes:

  1. Development of valid and reliable measures for assessing unmet needs
  2. Exploring barriers to service delivery
  3. Medico-legal and financial impediments to providing care for a person with dementia, and
  4. Testing the impact of innovative strategies to improve health outcomes for people with dementia and their carers.

You can learn more about ACcORD on their website

Watch a video about the ACcORD dementia program here (running time 1min 15 sec).

A multi-component web-based intervention to improve the well-being of people with dementia and their carers 

NHMRC Boosting Dementia Research Grant, 2017 - 2022 

The majority of people with dementia (approx. 70%) live in the community, many with support from family and friends. The physical, emotional and social demands of caring for persons living with dementia in the community can be high. However, it's still unclear what the best way is to provide support to carers in the community.

'iSupport' is a training and support program developed by the World Health Organisation. The program has been designed to provide skills and knowledge training to carers of people with dementia.

The randomised controlled trial will test:

  • the impact of a package of resources that includes the iSupport program, and 
  • facilitated group sessions with other carers and telephone support on carer health, well-being and coping with symptoms of dementia.  

Taking action: Increasing Advance Personal Planning by older adults 

ARC Discovery Grant, 2017 - 2021 

Advance Personal Planning (APP) involves older people discussing and writing down their wishes about future financial, health and personal matters in case they one day are unable to communicate decisions. It helps ensure that important people in your life know and follow your wishes. APP is important for everyone, but it is particularly important for older people. Currently, the uptake of APP in the community is low and variable.

This study will provide APP information and resources to:

  • older people
  • legal and health services in regional communities in New South Wales via community information sessions,
  • inter-professional workshops,
  • information dissemination, and
  • media campaigns.

The aim is to test whether this community action model can increase the uptake of APP by older people in these communities. 

Rural Communities Research Studies

A randomised controlled trial of an online peer support intervention for reducing symptoms of depression among community-dwelling older adults living in rural Australia 

NHMRC Targeted Call for Research, 2018 - 2023 

Social connectedness is crucial to maintaining mental health. However, peer relationships with others experiencing similar life situations reduce in older age, particularly among those living in rural areas.

Web-based technology is a promising way of providing accessible, sustainable and feasible solutions to support older people in remaining socially connected. Together with seniors and web designers, the Equity in Health and Wellbeing Research Program has developed a new online community.

'Seniors Connect' is a place for seniors to connect with other seniors, form new friendships, read and post about topics of interest, share experiences, and learn from others who are at a similar stage in life. This randomised controlled trial will test the impact of 'Seniors Connect' on the health and wellbeing of older adults living in rural Australia.

Socioeconomically Disadvantaged Research Studies

Developing and testing a community-informed intervention to increase VIA cervical screening in Eswatini 

Global Alliance for Chronic Diseases Grant, 2022-2024 

The country of Eswatini (formerly known as Swaziland) has the highest rate of cervical cancer in the world. Cervical cancer screening is effective at reducing deaths from this disease. However, in Eswatini rates of cervical screening are very low at just 5%. This two-phase study aims to develop and test culturally appropriate strategies to improve participation in cervical screening in Eswatini.

Phase One involves three descriptive studies that will explore barriers and enablers to cervical screening from the perspective of community-dwelling women and men, community health workers, and clinic nurses. The findings from this phase will inform Phase Two, where an implementation trial of evidence-based strategies to promote the uptake of cervical screening, such as clinic champions, education, and provision of feedback, will be developed and tested in three Estwatini clinics. We aim to achieve a 50% increase in cervical cancer screening among women attending participating clinics.​ 

Complex Medical and Chronic Conditions Research Studies

Providing web-based information to support colorectal cancer patients in their preparation for and recovery from surgery 

NHMRC Partnership Project, 2019 - 2024 (RecoverEsupport – Colorectal Cancer) 

Colorectal cancer (CRC) is the second most frequently diagnosed cancer, and most patients will undergo surgical treatment. Enhanced Recovery After Surgery (ERAS) pathways contain recommendations for clinicians and patients in order to improve recovery following surgery.

Evidence suggests adhering to these recommendations (e.g. getting patients up and moving and eating and drinking as soon as possible after surgery, deep breathing, managing their pain and their psychosocial wellbeing) can reduce post-operative stress and complications and the length of hospital stay. In response, we have developed the RecoverEsupport digital health intervention. This intervention consists of a website and patient and clinician alerts to encourage adherence to the above ERAS recommendations.

We are conducting a randomised controlled trial to test the effectiveness, cost-effectiveness, feasibility and acceptability of the RecoverEsupport intervention. The impact of the intervention on length of hospital stay, quality of life, re-admissions and mortality will be assessed. 

View the video about RecoverEsupport here.

Download the RecoveryESupport Trial information here.

Cancer Institute NSW Early Career Researcher Fellowship (RecoverEsupport – Breast Cancer) 

The RecoverEsupport intervention will be adapted and extended for use with breast cancer oncoplastic patients. The adapted intervention will be tested in a randomised controlled trial assessing intervention effectiveness, cost-effectiveness and acceptability. The primary outcomes are the length of hospital stay and quality of life three months post-surgery.

The impact of individualised care plans for elderly patients discharged home from hospital after neck or femur fracture: A randomised controlled trial 

NHMRC Partnership Project, 2021-2026 (BounceBack) 

Improved delivery of care to older Australians who sustain a broken hip is a major health need. Transitions from hospital remain a high-risk process for this patient group.

The Australian Hip Fracture Clinical Care Standard recommends all hip fracture patients receive an individualised written care plan prior to discharge to support this transition. However, only 24% of hospitals routinely provide written plans and their quality and content are variable. This randomised controlled trial will test the effectiveness and cost-effectiveness of a multicomponent discharge package delivered to older people who have sustained a broken hip.

Patients and their nominated support persons will be randomised to either usual care or a novel action-oriented discharge intervention incorporating a:

  • discharge planning session with an orthogeriatric Advanced Trainee
  • micro-learning knowledge enhancement package
  • discharge letter sent to the patient’s general practitioner within 48 hours of discharge, and 
  • tailored reminder letter to promote adherence to recommended actions.

Cost-effectiveness and health care utilisations data will be collected from the Pharmaceutical Benefits Scheme (PBS), Medicare Benefits Scheme (MBS) and New South Wales Admitted Patients and Emergency Department Data Collection.

Outcome data will be obtained via self-report surveys 90 days post-discharge. The robust methodology will provide currently lacking high-level causal evidence about the effectiveness of a discharge intervention to improve quality of life and reduce the likelihood of hospital readmissions for hip fracture patients. 

Improving the Well-Being of Patients with Acute Decompensated Heart Failure: a Randomised Controlled Trial 

National Heart Foundation Strategic Grant (Mental Health & Hearth Disease), 2022 - 2024 

Depression is highly prevalent and associated with increased hospitalisation and mortality among patients with heart disease.

A whole-person care approach to depression management, encompassing mental wellbeing, behavioural risk factors and treatment adherence, is needed.

This study will use a randomised controlled trial to test whether a well-being app for patients discharged with Acute Decompensated Heart Failure (ADHF) reduces depression. Patients will be provided access to the developed app, and via the app, will be prompted to monitor depression and clinical outcomes. Guideline adherent actions for clinically significant depression scores and clinical outcomes (e.g., medication adherence) will be utilised.

Automated parameters within the application will trigger specific action advice for patients, such as self-care recommendations (via videos or written information). Cardiac nurse specialists will track real-time patient data from a dashboard, and receive automated emails when patients provide high-risk data. Cardiac nurses will prompt cardiologists to action, where needed. General practitioners will receive automated emails for patients reporting high levels of depression and are encouraged to schedule a patient consultation. Outcomes will be assessed at one and six months via brief measures for Quality of Life. Intervention participants will also complete brief weekly/fortnightly measures for depression via the app. Healthcare utilization will be examined via patient self-report and hospital admission data. This study has the potential to reduce the burden of depression for patients following ADHF. This novel process will prioritise urgent patient mental health needs while empowering the patient with self-care knowledge. 

Understanding the needs of people living with dementia: Development of the UNI-D 

In Australia, over 470,000 people live with dementia.

As a result of our aging population, the number of people living with dementia is projected to double over the next 20 years. Dementia is incurable with symptoms worsening over time. Most people with dementia live in the community and express a desire to remain living at home for as long as possible. However, ensuring appropriate support to manage the symptoms of dementia and maximise the quality of life for both people with dementia and their carers can be challenging.  

Funded by a $3.3 million grant from the National Health and Medical Research Council, the University of Newcastle-led Australian Community of Practice in Research in Dementia (ACcORD) is working to improve the support and services available for people living with dementia. The research program involves a multi-disciplinary network of local and national collaborations, comprised of influential health care providers, highly skilled researchers and other relevant stakeholders in dementia care. To ensure the research is relevant active consumers are included in the Executive and all working groups. 

To improve the well-being of people with dementia and their carers it is essential that we first obtain an accurate understanding of their specific needs and concerns. Previous studies have examined the unmet needs of people with dementia from family caregivers’ or clinicians’ perspectives. However, their views may not accurately capture the unmet needs of these individuals. Where possible, people with dementia should be asked directly to report on their experiences.   

Our researchers have developed the first self-report unmet needs instrument (UNI-D) specifically to examine the views of people with dementia. The instrument was developed through interviews with people with dementia, literature reviews, pilot testing and expert opinion.

The UNI-D holistically assesses unmet needs from the perspective of the person living with dementia across 5 domains: daily tasks, activities and hobbies, health and wellbeing, and access to support and support for dementia. In a recently published work, ninety-five people living with dementia were invited to complete the UNI-D by geriatricians, carers, support groups and respite centres. Eighty-five per cent identified at least one unmet need.

The most commonly identified unmet needs described by those living with dementia were: remembering things, finding possible treatments for dementia, understanding who to contact regarding a problem or concern, and seeing friends and family more often. 

Research findings have recently been accepted for publication in the Journal of Alzheimer’s Disease. The results of this research have informed the design of interventions aimed at increasing the quality of life of people with dementia and their carers by providing targeted support.

Evaluation of the impact of this work on research, policy and practice continues. 

LGBTIQ+ Health Research Studies

NSW MoH funding Longitudinal health outcomes for transgender youth, 2022-2024

This project will create a longitudinal state-wide Gender Services database as a collaborative project between Hunter New England and Southeast Sydney Local Health Districts, Sydney Children’s Hospitals Network, HMRI, and consumer advisory group. This project team will also collaborate with ARCTYC, a newly established National Consortium, to optimise care for transgender youth and facilitate future research opportunities; ARCTYC partners include Murdoch Children’s Research Institute, Telethon Kids Institute, University of Sydney, University of Melbourne, Monash University, Western Sydney University, Flinders University, The Royal Children’s Hospital Melbourne, Perth Children’s Hospital.

HMRI Equity in Health & Wellbeing Small Grants Scheme: Fem E2 project, 2022-2023

The TransFem E2 implant study is led by the John Hunter Hospital department of Endocrinology and Sexual Health Clinics. The project aims to evaluate the acceptability, safety, and efficacy of estradiol (E2) implants for feminising therapy, an area where published research is lacking. This is a collaboration between HMRI and Hunter New England Sexual Health and Endocrinology departments, with a plan for future collaboration within the Primary Health Networks across NSW.

Maple Leaf House collaboration with UNSW Kirby Institute, 2023

Chief Investigators: Dr Bridget Haire, Dr Rosaline Foster, Prof Christy Newman, and Ava Del Tufo. This project aims to understand the multifaceted impact of living in a rural community on the health and wellbeing of transgender people.

Maple Leaf House collaboration with HMRI GrowUpWell and School of Psychology UoN

Chief Investigators: A/Professor Linda Campbell and Sophia Georgas: This project aims to understand and support the intersectionality of autism and gender diversity.

Dr Jia Ying Ooi
Research Program :
  • Equity in Health and Wellbeing Research Program
Research Topics :
Dr Anna Rose
Research Program :
  • Equity in Health and Wellbeing Research Program
Research Topics :
Roberta Ryan
Research Program :
  • Equity in Health and Wellbeing Research Program
Research Topics :
Laureate Professor Robert Sanson-Fisher
Research Program :
  • Equity in Health and Wellbeing Research Program
Research Topics :
Associate Professor Katie Wynne
Research Program :
  • Equity in Health and Wellbeing Research Program
Research Topics :
Dr Rebecca Wyse
Research Program :
  • Equity in Health and Wellbeing Research Program
Research Topics :
Effective Health Services, Healthy Lifestyles, Preventing Cardiovascular Disease