In this blog, Siân Slade shares how, through her research interest into the difficulties of navigating the healthcare system in Australia, she created a policy and advocacy project: #NavigatingHealth. The aims of the project are to streamline the silos and address the fragmentation of healthcare by bringing together all those who are developing solutions to enable patients and carers to better navigate healthcare journeys.
Background
About 10 years ago, I listened to a friend’s experience navigating cancer and puzzled over the challenges encountered. These made me question my prior assumption of 'patient-centricity' across healthcare.
In 2015, the Organisation for Economic Co-operation and Development (OECD) released a report highlighting the complexities of the Australian healthcare system. This led me to realise that while we do have patient-centred care, it is often provider dependent, not system-wide, and relies on the patient (or carer) to navigate the system; a time when individuals are at their most vulnerable.
Given 'the standard you accept is the standard you walk past”, I decided to do 'my bit' to address this. I enrolled in a Master of Public Health, researching healthcare navigation in Australia. I found there was a fragmented approach to try and address an already fragmented problem. This led me to embark on a PhD as well as develop a policy and advocacy platform: #NavigatingHealth.
Setting up a national network and community of practice
My focus has always been on a practical approach that solves problems for individuals but also seeks to understand how to scale these at a systems level to sustain change in the long-term.
If this was a known problem, why was nothing being done to address it? Surely this was something government were addressing... or there must be an app? I spoke to lots of people—patients, carers, speakers at conferences, those who had written books of their healthcare experience and, yes, those developing apps. Everyone agreed it was a problem, but nothing was addressing the totality of the problem.
The problem was not just in navigating healthcare, but also the challenges navigating related systems, such as those for people with disabilities, or for aged care, as well as social services and education.
#NavigatingHealth started life as two, 60-minute webinars held in mid and late September 2021, supported by the Australian Disease Management Association. The inaugural webinar speakers provided vignettes across a life journey—from childhood through to getting older—based on their own lived-experiences as patients, carers or professionals (not-for-profit, health services and government).
The positive reception of the webinars led to setting up a bimonthly national network and community of practice in Australia that ran until the end of 2024. The meetings were deliberately not recorded to build a safe space for people to share ideas, build tacit (word of mouth) knowledge and a like-minded solutions focused community. Summaries of all the events and speakers are available on the #NavigatingHealth project page.
In health, information and projects evolve. Building an online community was low-cost and accessible to everyone.
The success of the Australian approach led to a series of global webinars using the same format of expertise provision from individuals in research, policy, and advocacy and health services. The first global webinar was held in 2022 attracting over 20 countries.
Connecting and collaborating
The 'glocal' community continues to grow. Projects are constantly evolving, elevating and expanding as well as exiting often impacted by funding constraints.
In the spirit of a complex adaptive learning health system, core to our success is the community knowledge built through relationships, trust, like-values and non-linear interactions. Taking an approach that is resourceful versus one requiring constant resourcing (we use accessible tools such as LinkedIn and more recently Bluesky) to provide an effective, free platform to keep individuals in touch with one another.
Our dedicated #NavigatingHealth project page on the Nossal Institute for Global Health website at the University of Melbourne acts as a central hub for events and resources. The genesis during the pandemic and expansion virtually through Teams and Zoom, as well as in-person post-pandemic, has enabled different ways to expand the national community, the global network and we welcome all-comers. The project is voluntary and our success is based on linking people, developing relationships, sharing expertise, maintaining momentum and the opportunity we all have to impact into #NavigatingHealth.
The annual forums, 2024 #NavigatingHealth Simplifying Complexity and 2025 #NavigatingHealth Enabling Patients, System-Wide, focused on bringing together colleagues nationally in Australia. The in-person workshops created the opportunity to build community, share ideas, leverage learnings and also provide educational content.
These collaborations have allowed development of materials for curriculum and teaching, and an evolving conversation about the importance of systems-thinking.
We developed a short global project collecting stories from individuals who are happy to be involved. Our video, NavigatingHealth - why this matters, provides a glimpse of our approach.
Looking forward
The Future of Health Report published in 2018 highlights that our health systems, locally and globally, will change from 'one size fits all' to one that is personalised. The challenge is how?
Future of Health Report, CSIRO 2018.
The 'secret sauce' is that by working collaboratively we can all be part of evolving and effecting systems change. The work is underpinned by equity and a focus on enabling early access to care, addressing barriers, such as financial or cultural constraints, and helping to make visible information asymmetries and power imbalances to ensure effective collaboration and co-production.
Building on the success of our past forums, planning for 2026 is underway. Block out 1 April 2026 in your calendar for the inaugural #NavigatingHealth Day!
Our collective expertise is our power—let’s do this!
Want to know more? Please get in touch with Siân at
[email protected] or via LinkedIn.
Further reading on the hub:
The challenges of navigating the healthcare system
How the Patients Association helpline can help you navigate your care
Lost in the system? NHS referrals
In this blog, Siân Slade shares how, through her research interest into the difficulties of navigating the healthcare system in Australia, she created a policy and advocacy project: #NavigatingHealth. The aims of the project are to streamline the silos and address the fragmentation of healthcare by bringing together all those who are developing solutions to enable patients and carers to better navigate healthcare journeys. Background About 10 years ago, I listened to a friend’s experience navigating cancer and puzzled over the challenges encountered. These made me question my prior assumption of 'patient-centricity' across healthcare. In 2015, the Organisation for Economic Co-operation and Development (OECD) released a report highlighting the complexities of the Australian healthcare system. This led me to realise that while we do have patient-centred care, it is often provider dependent, not system-wide, and relies on the patient (or carer) to navigate the system; a time when individuals are at their most vulnerable. Given 'the standard you accept is the standard you walk past”, I decided to do 'my bit' to address this. I enrolled in a Master of Public Health, researching healthcare navigation in Australia. I found there was a fragmented approach to try and address an already fragmented problem. This led me to embark on a PhD as well as develop a policy and advocacy platform: #NavigatingHealth. Setting up a national network and community of practice My focus has always been on a practical approach that solves problems for individuals but also seeks to understand how to scale these at a systems level to sustain change in the long-term. If this was a known problem, why was nothing being done to address it? Surely this was something government were addressing... or there must be an app? I spoke to lots of people—patients, carers, speakers at conferences, those who had written books of their healthcare experience and, yes, those developing apps. Everyone agreed it was a problem, but nothing was addressing the totality of the problem. The problem was not just in navigating healthcare, but also the challenges navigating related systems, such as those for people with disabilities, or for aged care, as well as social services and education. #NavigatingHealth started life as two, 60-minute webinars held in mid and late September 2021, supported by the Australian Disease Management Association. The inaugural webinar speakers provided vignettes across a life journey—from childhood through to getting older—based on their own lived-experiences as patients, carers or professionals (not-for-profit, health services and government). The positive reception of the webinars led to setting up a bimonthly national network and community of practice in Australia that ran until the end of 2024. The meetings were deliberately not recorded to build a safe space for people to share ideas, build tacit (word of mouth) knowledge and a like-minded solutions focused community. Summaries of all the events and speakers are available on the #NavigatingHealth project page. In health, information and projects evolve. Building an online community was low-cost and accessible to everyone. The success of the Australian approach led to a series of global webinars using the same format of expertise provision from individuals in research, policy, and advocacy and health services. The first global webinar was held in 2022 attracting over 20 countries. Connecting and collaborating The 'glocal' community continues to grow. Projects are constantly evolving, elevating and expanding as well as exiting often impacted by funding constraints. In the spirit of a complex adaptive learning health system, core to our success is the community knowledge built through relationships, trust, like-values and non-linear interactions. Taking an approach that is resourceful versus one requiring constant resourcing (we use accessible tools such as LinkedIn and more recently Bluesky) to provide an effective, free platform to keep individuals in touch with one another. Our dedicated #NavigatingHealth project page on the Nossal Institute for Global Health website at the University of Melbourne acts as a central hub for events and resources. The genesis during the pandemic and expansion virtually through Teams and Zoom, as well as in-person post-pandemic, has enabled different ways to expand the national community, the global network and we welcome all-comers. The project is voluntary and our success is based on linking people, developing relationships, sharing expertise, maintaining momentum and the opportunity we all have to impact into #NavigatingHealth. The annual forums, 2024 #NavigatingHealth Simplifying Complexity and 2025 #NavigatingHealth Enabling Patients, System-Wide, focused on bringing together colleagues nationally in Australia. The in-person workshops created the opportunity to build community, share ideas, leverage learnings and also provide educational content. These collaborations have allowed development of materials for curriculum and teaching, and an evolving conversation about the importance of systems-thinking. We developed a short global project collecting stories from individuals who are happy to be involved. Our video, NavigatingHealth - why this matters, provides a glimpse of our approach. Looking forward The Future of Health Report published in 2018 highlights that our health systems, locally and globally, will change from 'one size fits all' to one that is personalised. The challenge is how? Future of Health Report, CSIRO 2018. The 'secret sauce' is that by working collaboratively we can all be part of evolving and effecting systems change. The work is underpinned by equity and a focus on enabling early access to care, addressing barriers, such as financial or cultural constraints, and helping to make visible information asymmetries and power imbalances to ensure effective collaboration and co-production. Building on the success of our past forums, planning for 2026 is underway. Block out 1 April 2026 in your calendar for the inaugural #NavigatingHealth Day! Our collective expertise is our power—let’s do this! Want to know more? Please get in touch with Siân at [email protected] or via LinkedIn. Further reading on the hub: The challenges of navigating the healthcare system How the Patients Association helpline can help you navigate your care Lost in the system? NHS referrals
