Consumer engagement is everyone’s business

A fundamental goal for the VCCC is to ensure that consumer engagement is integral to all its programs, creates opportunities for collaboration across the alliance, and reinforces our ethos to keep patient experiences at the forefront of our thinking. Considered a key element of the VCCC’s Strategic Research Plan, great strides have been made in this area. The new VCCC consumer engagement manager role is a vital link in assisting the organisation’s Cancer Consumer Advisory Committee to implement the VCCC Consumer Engagement Action Plan which came to life this year.

Consumer Engagement Toolkit

Consumer toolkit pageviewsThe VCCC Consumer Engagement Toolkit was launched December 2019, providing advice and strategies for effective integration of consumer perspectives into progressive cancer research. The online toolkit is a collection of resources and case studies for consumers and those who work with them in health and medical research organisations. It assists people in understanding and implementing consumer engagement processes and practice within their own settings. Since the online resource was launched, there have been 6,000 pageviews and 523 sample documents downloaded from the VCCC website.

The toolkit was introduced at the first VCCC Consumer Engagement Forum attended by consumers, administrators and executives, academics and researchers and health professionals. There was a strong turnout from alliance members as well as representation from Cancer Australia, Department of Health and Human Services, Melbourne Academic Centre for Health, Safer Care Victoria and Cancer Council Victoria. Evaluation of the forum concluded:

  • 96% positively endorsed the interactive event
  • 75% reported an increased understanding of the VCCC and its purpose
  • 96% said they would look at the new online toolkit
  • 91% would advocate for improved consumer engagement

Consumers as partners in research

Relationship building workshopsConsumers have the expertise of a lived experience, a unique perspective not often represented or considered in research teams. Increasingly patient insights are incorporated into managing clinical care however consumer and researcher relationships are less developed. To assist researchers to involve consumers at the earliest stages of research, the VCCC presented a series of six researcher workshops at the Royal Children’s Hospital, Olivia Newton-John Cancer Research Institute and University of Melbourne, facilitated by Anne McKenzie AM.

Ms McKenzie is a nationally regarded leader in consumer engagement who also lent her expertise to developing the course content of the Cancer Research subject in the Master of Cancer Sciences postgraduate degree collaboratively developed by the VCCC and University of Melbourne.

Consumer remuneration

In recognition of the significant impact consumers have had on VCCC projects and programs, recompense in acknowledgement  of consumer contribution and expertise was introduced this year. Remuneration is now offered to all consumers involved with VCCC programs and activities reflective of the level of participation aligning with the VCCC Consumer Engagement Model.

“I find introducing honorariums focuses the requestor into efficient and respectful use  of the resource, and positively changes some volunteers’ accountability for their contribution.”
- VCCC Cancer Consumer Advisory Committee member Keith Donohoe 

Consumer engagement pipeline

Consumer case study

The VCCC has a commitment to capture the voice of consumers, to listen to the unique and crucial points of view that they bring and incorporate these into decisions that shape strategy and program development. In one of many examples, a progressive, multi-site internship program to upskill the clinical trials workforce, is benefiting from close consumer involvement.

Les Leckie consumer

“I am the Peter MacCallum Cancer Centre representative on the VCCC Cancer Community Advisory Committee.

I have had a long association with private and public sector organisations and have personal experience of cancer. I think for a lot of us that have enjoyed stimulating careers, being involved in innovative programs developing young talent is hugely gratifying.

“Internships are competitive… for good reason. A month after the inaugural program, 100 per cent were employed in the clinical trial sector.

The right person for the job

“Having been a patient myself, I’m motivated to maintain a connectivity to patient perspectives which I have managed to achieve through an association with Cancer Connect at Cancer Council Victoria. Applying this helps to identify the best candidates.

“I was provided information and took time to understand the experience and aspirations of prospective interns. It was terrific to work with the manager of PCCTU, Marian Lieschke. Applying for an internship can be a stressful and emotional experience and it was great to work alongside a leader in the field to build trust and give candidates the best opportunity to display their talents.”

Marion agrees, “We conducted over 30 interviews over several days. Les not only attended every interview but was prepared. He took the role seriously and the other panelists appreciated this. He has remained involved in the journeys of the interns, providing a constancy during our first year of this program that has been amazing.

Consumers on the team

“My experience working with Les changed how I view the value of consumer engagement. I have since had consumer involvement in other projects. I believe that where the skills that the consumer brings matches  the role being asked of them, there can be fabulous outcomes.”