Thinking outside our own silos to strengthen integrated care for people living with a rare disease – a health system simulation workshop

Thinking outside our own silos to strengthen integrated care for people living with a rare disease – a health system simulation workshop

Rare diseases are complex, life-long, and many have no definitive cure.

People living with rare disease experience inequitable access to needed health care and require care from multiple health care teams and support services across multiple locations. On top of this, they experience fragmented care, with convoluted care journeys, largely due to the fragmented and siloed ways that health systems tend to be organised. Information isn’t always shared across different care teams, different types of health care providers or across health and social care sectors.

The Asia-Pacific Conference on Integrated Care (APIC-3), in November 2023 provided an ideal opportunity to explore improving care integration for people living with rare disease through a health system simulation workshop.

Why do health systems need to consider rare diseases?

  1. As a group, rare diseases are common: a rare disease affects 1 in 10,000 people but there are at least 7000 different rare diseases.
  2. While there are few people with individual rare diseases, the total number of Australians living with a rare disease is about 2 million people.
  3. Rare diseases have a substantial economic impact on our health systems.1

Australia launched its first National Strategic Action Plan for Rare Diseases in 2020 (The Action Plan), which is the Australian Government’s first nationally coordinated effort to address rare disease in Australia. The focus of the Simulation Workshop held at APIC-3, strongly aligns with Pillar 2 of the Action Plan; “Provide rare disease care and support that is integrated and appropriate for all Australians living with a rare disease, while being both person and family centred.”

“The responsibilities need to start to shift toward the sector to understand why that respect is not there in the first place.”

Person living with an undiagnosed rare disease

“This multi-stakeholder approach…is the philosophy that multiple stakeholders not only have an interest, but a responsibility to be part of this work.”

Rare disease organisation leader & sibling of a person living with a rare disease

Why a Health System Simulation workshop?

Health system simulation workshops are designed to convene multiple stakeholders who are a part of the health system or who have influence on the health system, including consumers/patients, caregivers, not-for-profit organisations, health care professionals, researchers, policymakers, industry, and the media, to name a few.

Workshop participants are challenged to role play in a completely different role to their usual day-to-day role. Needless to say, this is challenging, fun and generates interesting lively discussions!

Health system simulation workshops help multiple stakeholders to understand the roles of others in the health sector, and the need for multi-stakeholder collaboration to solve thorny problems that simply cannot be solved by a single stakeholder group alone.

The workshop was supported by the Rare Disease Awareness, Education, Support and Training (RArEST) Project which was funded by the Australian Government to undertake work aligned with the implementation of the Action Plan. The RArEST Project is a collaboration between Rare Voices Australia, the University of New South Wales, the University of Western Australia, and Macquarie University.

So, how did the health system simulation workshop go? What happened?

Our participants were challenged to think about a hypothetical scenario on how integrated care could be improved for people living with a rare disease whilst managing a 7% budget cut across all government portfolios – not an uncommon scenario in health systems and governments all around the world! Participants were provided with the following prompt:

The PM has asked you to improve care for complex, chronic, rare conditions.

How would you do this?

Participants were randomly assigned into stakeholder groups which included the department of health (state health system including health managers), primary care (including general practitioners), health consumers (people living with a rare disease and rare disease organisations), and the media.

They were asked to role play and pretend that they were a member of the assigned stakeholder group, for example, health consumers became allied health professionals and health managers became journalists and so forth.

All groups stayed together, discussing the issues at hand within their own newly assigned group. This was not surprising – we do all tend to gravitate to “our own” even when our roles are artificially assigned!

 

Although the enthusiasm among each group was palpable, it took an eager “journalist” to approach and talk with another group of course they made a beeline to the specialists!

This bold move spurred on a collective “aha!” moment where people realized they needed to speak with others about the problem to come up with a solution.  The department of health followed suit once they caught wind of what the journalists were doing.

Suddenly, the game was on! People began to think more broadly about their role as part of a system and how their role fitted in or could fit in with others – each “cog” part of the health system “machine”.

The “primary care table” talked about how they, the general practitioners feel isolated from the rest of the system, and the Medicare reimbursement system restricts them from innovating. They moved to talk to others, including the specialists. Interestingly the “specialists” stayed at their table, waiting for others to come to them. Eventually, the “health consumers” were visited by other groups, but it did take some time!

Time and time again, groups reflected the need to work in close collaboration with others within the health sector, as well as with those in disability, social services, and education. There was a strong inclination towards providing care that is holistic and recognises the whole person.

 

Additionally, many groups reflected the need for funding and resourcing. They proposed sharing data across the system, which would help integrate care for people living with a rare disease. They suggested that local health districts needed to track data to ensure resources were not being duplicated.

Does this sound familiar? That is how systems tend to operate, however this game enabled people to move beyond their pre-determined “silos” and address the problem through different lenses.

Five key learnings came out of the simulation:

  1. There is no one solution to such a complex issue -there are many different potential solutions, and none will be perfect.
  2. In a complex, adaptive health system, many stakeholders want different things and see the problem from different angles – the beauty of the workshop was that it made different people see the problem through new eyes as they “became” someone else in the system.
  3. Many different parts of the system are continually changing and interacting with one another, creating predictable and unpredictable effects – that’s why it’s important to work together to generate adaptable solutions to fit in with changing needs and contexts.
  4. People can feel overwhelmed by the systems’ complexity, but we have the power to influence our own part while considering other parts of the system with which we interact.
  5. Solutions to complex issues lie in multi-stakeholder partnerships and collaborations.
  6. Talk to the end user – place health consumers and their families and carers at the centre! Making the health system work better for them must be the ultimate aim so involve them from the beginning!

Lasting sentiments: be brave, be bold and be willing. Don’t wait for the perfect solution. Collaborate with others to work together as a finely oiled “machine”, rather than a single “cog”, spinning in one place and not getting traction.

You can read about other examples of previously run health system simulations below:

When we move beyond our usual silos, what solutions can we find to low-value healthcare?

Health System Simulation – Summary of the PCHSS ‘Treatment overload’ event.

References:

  1. Teutsch, Suzy et al. “Australian children living with rare diseases: health service use and barriers to accessing care.” World journal of pediatrics: WJP vol. 19,7 (2023): 701-709. doi:10.1007/s12519-022-00675-6

Yvonne Zurynski is Professor of Health System Sustainability, Australian Institute of Health Innovation, Macquarie University, and is also the coordinator of the NHMRC Partnership Centre for Health System Sustainability.

Christina Rojas is the Stream 3 Project Officer for the RArEST Project, Australian Institute of Health Innovation, Macquarie University.