Illustration of person hugging and talking to loved ones

Building an impact network for systemic change in end of life

What if all Australians and their loved ones had better end of life experiences: dying peacefully, connected, life in order, in a place of their choosing and free of pain? Our Impact Network seeks to achieve just that.

The background

In 2017, the JO & JR Wicking Trust asked TACSI to scope where the Trust could most effectively invest to maximise the potential for impact and support innovative responses.

Our research showed that people are missing essential ‘death literacy’ about the choices available to them, and that there’s a disconnect between key stages in the end of life journey that effect good outcomes, including personal transitions (such as progression of illness or changes in financial circumstances), medical transitions (such as those between general practice, acute health, specialist health and community health) and funding stream transitions (including between and within health care streams, aged care streams and disability support streams).

The recommendation we gave the Trust based on these insights and opportunities was to attempt joining up existing approaches and people working for change in the system so we could create a diverse Impact Network that supported members to share their knowledge, learn from each other and ultimately do new things together.

We agreed that our goal was to set the scene for better end of life outcomes for everyone, by:

  • Increasing innovation capability across the system;
  • Defining shared challenges, opportunities and value; 
  • Aligning effort and investment; 
  • Creating space within which to safely but robustly challenge the status quo; and, 
  • Coordinating for influence and to scale efforts.

The vision

Together, we co-created a purpose and mission for an Impact Network:

  • Connect and engage with end of life changemakers nationally.
  • Gather, share and model innovative ways of thinking and acting.
  • Leverage the network and affiliates to strategically influence the reform of structural, relational and cultural barriers suppressing better outcomes.
  • Support system incumbents to bridge the ‘knowing—doing’ gap so that all Australians (young and old) have the highest quality of life until death.

Our approach

Our chosen approach was to seed an Impact Network. Networks and systems have a similar ability to adapt and change to their given context; both respond to input in emergent and often surprising and unplanned ways over time. We figured that a moving system needs a moving ecosystem for response and transformation.

We started by connecting end of life changemakers and convening them monthly in a space designed to lift up and out of ‘business as usual’ and into collective sensing.

In the early convenings, we were focused on building relationships and supporting members to define and align around a shared purpose, shared challenges and a shared vision.

What’s an Impact Network?

A highly connected network of changemakers acting in aligned independent and collaborative ways with a focus on seeing/thinking and acting differently using systems approaches, innovation mindsets and participatory methods.

I think the hardest thing when you start is just finding the common purpose, and also getting away from dying as ‘just an old person thing’. There were a lot of discussions and obviously everyone had their own lens. So to find a common lens among all of the different ones I thought was quite an interesting process.

Simon Lowe, The Ageing Revolution

Using systems mapping, we pointed to the conditions in the system that were keeping problems stuck and, with all the unique perspectives of the group, used participatory decision making processes to choose the leverage point over which the collective felt most influence: education and death literacy.

This focus allowed the network to generate ideas to affect change and consider both independent and collaborative actions that they could take in alignment with our shared goal.

The systems approach to what we're doing is going to be the game changer in all of this. We're all doing the work in our own little patch, but for me, that one big challenge with end of life is that it touches primary care, aged care, and acute care. Then we've got bereavement and grief… There's so much to this. It's those silos… it's the spaces in between where the work is to be done. How do we integrate and bring it together? That is the missing bit.

Vicki Barry, Your Departure Lounge

An ideas portfolio was created to house a nursery of ideas, and three ideas from this portfolio were chosen by the network for collective action. These ideas formed our first ‘hubs’: working groups that identify a specific shared interest, challenge or ambition.

 

The three hubs currently active are:

End of life game hub

This hub is focused on designing games that open space for end of life conversations between players and their loved ones. This hub was funded from an innovation fund through a participatory granting process.

Knowing–doing gap hub

Most people who die in Australia each year will not receive care that fully reflects their preferences or needs, nor will they die where and how they would choose. We ‘know’ this and yet what people and professionals ‘do’ hasn’t shifted the statistics. There is a ‘knowing–doing’ gap that this hub is seeking to bridge.

Network sustainability hub

The Systemic Impact in End of Life Network is the only moving ecosystem of diverse change-makers from across the end of life system in Australia. The network responds in emergent ways to shift conditions within the system and improve outcomes for people. This hub exists to ensure the network can continue sustainably.

What is a hub?

A hub is a working group of network members — who opt-in because they share passion and interest for the hub purpose — working autonomously and responsible for reporting back to the broader ecosystem so everyone benefits from what is being learned.

Network weaving strengthens connections to make sure a network has a core of diverse groups and individuals and an extensive periphery of connections — links to new resources and ideas. Weavers unearth what members want to get from the network and link them to others in the network with similar interests and passions. ‘Closing triangles’ is one of the most effective ways to connect individuals and occurs when a weaver connects two previously unconnected members so they would each benefit from getting to know the other.

June Holley, Network Weaver Handbook

Key to the success of the hubs and the network overall is the activities of Network Weaving.

The insights

We learned that Impact Networks are about making time and space to support people working for change to build connections with other diverse changemakers, and to collectively see the system and commit to taking action.

Our key insights until now have been: 

  • Networks are sustained by emotions, connection and relationships. Spending time on building trust and personal connection every time we come together is vital
  • Learning about and prioritising what members tell you they want to ‘get’ from the network builds a strong value proposition and ongoing commitment from members
  • Using hubs as an opportunity to run experiments on shared problems helps distribute work, encourage collaboration and increase connections and alignment for action
  • Intentionally diluting centralised power by inviting members to co-lead sessions, set network strategy and form hubs builds collective ownership
  • Supporting members to see their sphere of influence or how to leverage their collective power and the broader reach of the network enables bigger thinking and eventually broader change

If I didn't have this connection to the richness and the perspectives and the things we share in this forum, I would have given up a long time ago. Because this journey I've been on is not for the faint hearted. Let me tell you, I need a lot of courage, a lot of resilience and there are so many roadblocks, so many barriers. I feel like I'm on page 10 when everyone else is on page one and will they just hurry up and catch up?

Vicki Barry, Your Departure Lounge

What’s next?

  • Recently the network was successful in receiving five additional years of funding from the JO & JR Wicking Trust to continue its activities.  
  • The End of Life game hub is about to begin prototyping five games from digital apps to playing cards, all focused on starting conversations about choices at the end of life.
  • The network is now setting intentions about where we want to be in five years time, and foundational steps to set us up well for success.

Interested in learning more?
We’d love to hear from you.