What matters to consumers?

How will we know what matters to patients unless we ask? This year, our expanding consumer network assisted us to understand and improve the patient experience of people affected by cancer and helped to create a research-informed roadmap to significant quality and safety improvements in cancer care.

Throughout the turmoil of the pandemic, cancer consumers have worked alongside us, adding value, advocating for consumer involvement, contributing to strategic planning, and amplifying the voice of those affected by the additional challenges of COVID-19.

Consumer engagement toolkit

The VCCC Alliance consumer engagement web-based toolkit continues to gain traction as a central resource for consumers and those who work with them. The toolkit contents assist awareness and understanding for those looking to implement or improve consumer engagement processes and practice. Users are encouraged to review a broad range of guidelines and templates that they can tailor to their own requirements.

With 12,850-plus pageviews recorded FY 20/21, the toolkit is clearly supporting a community-wide desire to apply best practice thinking to consumer engagement.

Strategic Program Plan 2021-24

Following the announcement of State Government funding for the VCCC Alliance for 2020-24, steering group members and co-chairs were sought to bring forward the draft programs in line with the budget and support their implementation over the next three and a half years.

Steering group considerations mandated the inclusion of at least two consumer representatives in each group. The process of developing the Strategic Program Plan 2021-24 has been a success story, involving more consumers than ever before with consumer representatives reporting a feeling of genuine ownership of the plan and its potential.

Remuneration for consumers

VCCC Alliance member, St Vincent’s Hospital Melbourne, introduced remuneration for clinical governance committees based on a model demonstrated in the VCCC Alliance consumer engagement toolkit this year.

Remuneration as a form of financial recognition for consumer representatives is something the health sector has wrestled with for some time. The economic cost is a major consideration - but how and why consumers interact with services is also complex. As health systems more readily adopt the principles of patient-centred care, consumers play a key role in communicating their needs, values and sharing the expertise of a lived experience. Recognition of this contribution through remuneration is a significant achievement for the health sector.

Consumer representatives participate in ANZ forum

The inaugural Consumers Health Forum of Australia (CHF) Shifting Gears 2021 Virtual Summit in March and was the first Australian and New Zealand conference focused on consumer leadership and experience in health care.

The VCCC Alliance sponsored nine consumer representatives to attend the summit to support their professional development. For consumers involved on steering committees, it provided the opportunity to learn from others and share our own initiatives.

A shared vision: consumer engagement in research

The second annual consumer engagement forum hosted by the VCCC Alliance Cancer Consumer Advisory Committee (CCAC) brought together consumers and researchers in equal numbers alongside those who support these working relationships. With the majority of participants having some existing experience of consumer-researcher programs, the forum explored effective consumer integration at all stages of the research cycle.

Consumers in Victorian COVID-19 Cancer Network (VCCN)

The VCCN had a crucial role to support the cancer workforce this year and consumer representatives were central to discussions and decision-making.  At the forefront was the knowledge that people affected by cancer have a higher risk of poorer outcomes if they contract COVID-19 than the general population. The patient information group of the VCCN played a key role in developing an education campaign through Cancer Council Victoria and other VCCN public education campaigns.

Consumer advocacy from the VCCC Alliance Cancer Consumer Advisory Committee on telehealth, hospital visitation restrictions, end-of-life care, and the drop in diagnostic screening enabled the VCCN to quickly navigate difficult terrain collaboratively.