In this episode, our host Matt Roger sits down with Dr Shantel Duffy (Manager, Research Governance and Development at NBMLHD), and Kelly Thompson (Director of Research Operations at NBMLHD) to discuss the roles that consumers can and should play in health and medical research.

In 2016, the National Health and Medical Research Council (NHMRC) and The Consumers Health Forum of Australia Ltd (CHF) released the Statement on Consumer and Community Involvement in Health and Medical Research (the Statement). The Statement's purpose is to guide research institutions, researchers, consumers and community members in the active involvement of consumers and community members in all aspects of health and medical research.

The NHMRC understands the importance of engaging with consumers and the community on its role and activities, whilst also providing leadership and guidance to the health and medical research sector on the meaningful engagement of consumers throughout all stages of research and health care.

Consumer voices often say “Nothing about us without us’. This phrase supports the idea that those who are affected by research have a right to influence what is researched and how this is done. To that end, we outline four levels of health and medical research codesign.

We reflect on some of the barriers and challenges to meaningful consumer engagement in health and medical research, and the ways to overcome those challenges and barriers so that consumers, patients and their families can become better involved in health and medical research.  

 As research relies on a lot of sensitive patient data, we discuss the governance mechanisms to maintain the security and confidentiality of that data. Shantel and Karen also provide their thoughts on the use of Artificial Intelligence in health and medical research.

Finally, we celebrate some success in consumer engagement in a health and medical research project that had a positive impact on patient health outcomes and service delivery due to the engagement of consumers.

Read NBMLHD's Research Strategy and Implementation Plan here:

https://www.nsw.gov.au/sites/default/files/2022-10/nbmlhd-research-strategy-2022-2025.pdf

Our host Matt Roger and NBMLHD Board Chair Peter Collins talk all things consumer engagement at the Nepean Blue Mountains Local Health District.

In this episode our host Matt Roger sits down with Karen Alexander (Nepean Blue Mountains Local Health District Disability and National Disability Insurance Scheme Manager).

Like everyone else, people with disability want to live their best life, with access to all areas of life including education, employment, health care, housing, justice, love, and relationships. Disability is a part of being human. Disability results from the interaction between health conditions, environmental and personal factors. Everyone is different, and disability can be visible or invisible.

Having an equitable health system that supports the healthcare needs of all people regardless of disability is an important consideration in service planning, service delivery and policy development. Karen offers her perspective on what “inclusive health care” means to her and her role in the District, and the social and medical model lenses of looking at disability.

We reflect on barriers to meaningful consumer engagement identified in research outcomes that tend to indicate that people with disability have poorer self-reported physical and mental health, higher rates of chronic conditions and poorer access to health services.

Launched in 2023, we discuss the District’s Disability Inclusion Action Plan and what it means for patients, consumers and staff. Building on that Action Plan, we reflect on the role of the District’s Disability Consumer Council supporting ways that people with living with a disability (and their families) can overcome those challenges and barriers to become better involved in their own health care journey.

We explore the ways that doctors and other health care workers can better engage with those patients living with the challenges of a disability and their families in service planning and policy development.

We also celebrate a recent disability health initiative that had a positive impact on patient health outcomes.

Finally, we provide an overview of the National Disability Insurance Scheme and Karen’s role in assisting patients transition from hospital-based care to National Disability Insurance Scheme funded services and supports.

In this episode our host Matt Roger sits down with Belinda Berryman (Communications and Engagement Manager, Health Infrastructure and co-chair of the Nepean Hospital Redevelopment Consumer Committee) and Julie Russell, a fellow consumer representative in the Nepean Blue Mountains Local Health District and co-chair of the Nepean Hospital Redevelopment Consumer Committee.

Nepean Hospital is the main hospital facility in the District and is currently in Stage 2 of its $1 billion, multi-year redevelopment. To provide a lived experience voice into the Redevelopment, the Consumer Committee has been operating for many years.

We discuss the importance of consumer engagement in the Nepean Hospital Redevelopment, including the communication strategy for keeping consumers and patients informed. We reflect on how consumers are leveraging broader consumer networks and patient experiences in the codesign of the Redevelopment.

Belinda and Julie discuss some real examples of how consumer engagement in Stage 1 of the Nepean Hospital Redevelopment has delivered positive benefits for consumer and patient experiences alike, and how ongoing consumer engagement is helping to influence Stage 2. On the flipside, we also consider some of the main barriers or challenges to genuine consumer engagement.

Belinda highlights how the consumer codesign lessons learned from the Nepean Redevelopment Consumer Committee are being applied in other NSW Health Infrastructure significant redevelopment projects. Julie also provides some insights into where to next for strengthening consumer engagement in significant Redevelopments of hospitals and health services.

In this episode we sit down with Nepean Blue Mountains Local Health District’s new Chief Executive, Lee Gregory.

We briefly discuss Lee’s professional background before tackling questions about the barriers and challenges to consumer engagement, the value of remunerating consumer representatives, and how consumer engagement at scale can help to achieve NBMLHD’s strategic visions of innovation and excellence.

We discuss the need for cultural change within health and the role of technology to maximise the impact of consumer engagement in the face of health literacy challenges, cultural and linguistic diversity, and the nature of complex and chronic health conditions.

The issue of trust between clinicians and consumers is raised, and the need more for proactive approaches by health services to gather and use consumer feedback while integrating these processes into everyday workflows.

Matt and Lee reference some recent, concrete successes of effective consumer engagement at NBMLHD and we discuss the need for consumers to receive feedback on how their lived experience has helped improve service design and delivery.

In relation to future directions, Lee Gregory recognises the level of enthusiasm for consumer engagement at NBMLHD while aiming for ways to increase its influence on models of care.

In this episode our host Matt Roger speaks with Gordana Kostadinovska, Manager of the Nepean Blue Mountains Local Health District's Multicultural Health Service and Una Turalic, NBMLHD's Senior Cross-Cultural Development Officer.

We discuss gaps that exist within our health services for consumers from culturally and linguistically diverse (CALD) backgrounds and how the system can improve to achieve better outcomes for patients and their families.

We touch on the concept of cultural safety and how this can be attained in practice, providing examples of effective policy and planning for working with health services to develop better CALD services, focusing on how individual services can build their capacity, awareness and knowledge to better meet CALD needs.

The discussion canvases some of the main challenges faced by CALD consumers, the benefits of video interpreting services, and what genuine multicultural consumer engagement means. 

In this episode, our host Matt Roger is joined by two special guests.

Caroline Allen is an experienced consumer of mental health services and a passionate advocate for service improvement and reform, and Matt Russell is Director of Mental Health services at the Nepean Blue Mountains Local Health District (NBMLHD).

We discuss the introduction and potential impact of Advance Statements in Mental Health, the Mental Health Act, restrictive practices, and the use of Human Rights as a framework for improving mental health care.

We also offer some tips for how to get involved in your own care and touch on some recent successes for consumer engagement in Mental Health at NBMLHD.

For more information about consumer engagement and co-design at NBMLHD, contact [email protected]

Joining is in this episode is Dr Nhi Nguyen, Specialist in Intensive Care at Nepean Hospital, member of the NBMLHD Board, Clinical Lead for the Nepean Hospital Redevelopment, Clinical Director for Intensive Care NSW at the Agency for Clinical Innovation, lecturer with the University of Sydney, and ICU Clinical Advisor for the NSW Health COVID response.

Our conversation reflects on the value of human connection and compassion as a strength for health care workers. We discuss how patient interactions can bring joy to health workers, even in the most challenging of circumstances, and the value of curiosity and conflict as opportunities for continual improvement.

Dr Nguyen emphasises the role of medical leaders in providing clarity to health consumers about clinical decision making, and the need to balance clinical expertise with an understanding and appreciation of the values and context of a individual patient and their family.

We also discuss issues of consumer feedback and how it is received by health care workers, as well as the role of Boards to empower consumer engagement.

In this episode we speak with Mohamed Khadra, Professor of Surgery at the University of Sydney, Director of Surgery and Director of Strategy and Innovation at Nepean Blue Mountains LHD, and celebrated author and playwright.

Professor Khadra is also a passionate advocate for patient-centred and patient-led change in health care and was appointed an Officer of the Order of Australia in 2017.

We discuss how health care workers can partner with their patients to achieve the best possible outcomes, including how to balance the need for dispassionate objectivity with the compassion and subjectivity required for person-centred care.

In our pilot episode for the Better Together podcast we spoke with Kay Hyman, then Chief Executive of the Nepean Blue Mountains Local Health District, who has since retired from the organisation after a long and valuable contribution.

In our wide-ranging conversation we shed some light on the Nepean Blue Mountains LHD’s commitment to consumer engagement, including in relation to its ongoing redevelopment of Nepean Hospital in Western Sydney.

We also discuss some of the key challenges to meaningful health consumer engagement, including in relation to cultural and linguistic diversity, the need for better support for consumer representatives and better models for consumer engagement.