We ‘summit’ to know we are not alone!

Having participated in and spoken at the Shifting Gears Summit on March 18 &19, the take home message for me was “you are not alone”.

As patient partner with the Agency for Clinical Innovation, I was invited to participate in a panel discussion alongside other leaders in consumer partnership both from across Australia and the globe.  Our panel discussion was Engagement Capable Organisations and what such an organisation looks like. It was clear from all contributors that wherever we sit in our consumer partnership roles, in whatever country, the same principles apply. Engagement capable organisations have key things in common:

  • They have leadership that is committed to and makes active space for consumer partnership
  • Consumer partnership is a strategic focus of the organisation
  • They make space for consumer and lived experience roles who act as consultants and leaders to the organisation in how to achieve patient partnership and build organisational capability, and
  • There is support and resourcing to build the workforce’s skills in how to partner

Comfortingly, the panellists’ feedback indicated that becoming an Engagement Capable Organisation is a journey we are all on – that there isn’t a “final destination” with consumer engagement and partnership but rather it is an organic process open to constant quality improvement cycles. Just like any others are of health care design and delivery. Similarly, I learned from my peers that the tripping points I face in my organisation are the same they face. The evolution into Engagement Capable Organisations takes time and a lot of learning. 

… leadership, capability building, modelling and commitment are key…

Speaking to my peers who attended other sessions of the summit, this theme was reflected by them too.  It seemed that whatever the topic or area of consumer partnership, consumer leadership, consumer research being discussed, the sense is that leadership, capability building, modelling and commitment are key to success and sustainability when working with consumers. 

It was wonderful to learn that the topic of remuneration of consumer partners featured consistently in sidebar participant discussions – as well as being raised by speakers and panellists themselves. Knowing so many strong voices are advocating for a change here was really encouraging. This longstanding ethical debate seems to be reaching a critical point as we realise that to truly partner in an equitable, ethical and sustainable way we should be recognising the expertise, time, commitment and energy consumers bring to health design and delivery with more than just a nod of gratitude or letter of appreciation.

The issue of language also featured strongly. Not just the language we use both in reference to consumer engagement and definitions around consumer engagement and partnership work, but also the need to ensure language used when working with consumers is trauma-informed, respectful, psychologically safe and at a bare minimum understandable! Certainly, within the ACI we have followed up the summit with a session on how we may work toward standardising some definitions and trauma-informed terminology for our own staff. A common, SHARED language is critical if we want to increase our literacy and capability partnering with consumers.

It was wonderful to see so many consumers and people with lived experience co-presenting, facilitating and sharing the work they have led or done in partnership with health services. It is a noticeable shift beyond the old paradigm where clinicians and health leaders talk about the consumers they have engaged but never hear from the consumers directly.  It was so encouraging to see a legitimate shift from what has traditionally and typically been “consultation after the fact” to genuine, equitable partnership across the spectrum of engagement. We saw this modelled live and in the virtual flesh on the summit stage. To me there is no more powerful a demonstration for how consumer partnership can be done meaningfully than seeing it in action.  If there was anyone present with any covert doubts about the value of consumer partnership of whether it can ever be achieved in a genuinely equitable and meaningful way, this summit should have resolved those concerns. It is entirely possible and achievable, and it just takes a leap of faith and the courage of conviction.

The Shifting Gears summit brought me together with all the great thinkers and doers…

As someone with lived experience and someone who has been in a lived experience/consumer advisor role for more than 10 years, one of the things I have often felt is isolated.  The reality is that to date, not a lot of resourcing has been given to consumer partnership and engagement roles within the public health setting.  Within each organisation’s footprint there is usually only one or two positions allocated.  These solo roles are expected to cover everything from building capability within the workforce, find, recruit and train consumer partners, support services to meet standard 2 requirements, respond to enquiries within the service for staff requesting consumer partners, build relationships within the community and provide support to those consumers that regularly partner with the organisation.  In addition to this, if lived experience roles, we are often asked to provide some degree of systemic advocacy and act as consumer consultants in to the strategic and operational plans of the organisation. It is a lot. 

The Shifting Gears summit brought me together with all the great thinkers and doers that exist within the Australian (and global) consumer engagement network. Seeing the gathering of so many people committed to shifting gears in how health works with and alongside consumers was fantastic, reassuring, affirming and relieving.  Seeing and meeting so many people – even virtually – gave me a sense of the shared objective and removes the sense of splendid isolation. 

It was an inspiring, restorative and regenerative two days and leaves me with no doubt that this is the future of health design and delivery and so many exciting clinical and cultural changes will occur as a result. I am grateful to be a part of this history-making.

About the author

Portrait of the authorLiz Newton is Patient Partner with the NSW Agency for Clinical Innovation (ACI). Her role is to build capability within the organization and its partners around partnering with consumers in health care design and delivery. Previously she had 18 years’ experience working with Hunter New England Local Health District in education and consumer partnership roles. During her time as Senior Consumer Advisor there she set up the first Consumer Participation Unit in the state. Her work included systemic advocacy to drive human-centred health care, co-led innovations and reform including Police and Ambulance Early Access to Mental Health Triage via Telehealth, the Hearts in Health movement, and Towards Zero Suicide. Liz has lived experience of mental illness and suicidality as both a consumer and a carer. This experience spans her lifetime and is what led her to focus her energies in the field of consumer partnership and engagement. She is a storyteller and uses human experience to bridge the clinical and operational world of healthcare to the personal, individual experience of healthcare.