Cancer consumer involvement in research in Australia

Author:

Details:

Chair, Cancer Voices NSW Convenor, Cancer Voices Australia

21 July 2015

Celebrating 10 years (2005 – 2015) of Cancer Voices’ consumer involvement in research program

Cancer Voices is the independent volunteer voice of people affected by cancer in NSW. Following is a brief overview from first advocacy steps towards what is now a well-developed program of consumer involvement and engagement in cancer research.

Why is consumer involvement in research important?

The first years of this century saw substantial evidence and acceptance of the need to make research efforts more effective and relevant by engaging stakeholders – consumers, clinicians and funders (government and charity), in selecting research questions, designing studies and making funding decisions. The central challenge has been to engage meaningfully with consumers.

Also studied and accepted has been the acknowledgement that consumer involvement can and does add value to research. Most funders now realise that their donors are more engaged when they can be assured that research funded by their charity or institution is not only of high scientific merit, but also includes the needs and views of those who will ultimately benefit by it – consumers. A number of funders now require evidence in grant proposals that effective consumer engagement has indeed taken place.  

Cancer Voices quickly recognised these issues and that it was well-placed to provide an informed consumer view, either as a group, or through its nomination of informed, broad-view consumers. This allows Cancer Voices to concentrate on research which could improve cancer diagnosis, treatment, care and survivorship – core aims for Cancer Voices.

History

Cancer Voices was founded in NSW in October 2000, by a group of cancer consumer advocates who recognised the need for a combined voice about issues of interest or concern for people affected by cancer. As a volunteer, unfunded consumer organisation, we realised that to implement our recommendations and policy we would need a strong, committed, well-resourced partner. For our consumer involvement in research purpose, the perfect partner was Cancer Council NSW, the state’s preeminent cancer charity and funder of cancer research.

Being aware of early positive developments overseas, especially in the US, Cancer Voices put a three pronged proposal for consumer involvement in research, through its representative on the Cancer Council’s Cancer Research Committee in November 2001, and to its Board in December 2002.

These were:

  1. Increasing the rate and level of consumer involvement in the development of cancer research projects.
  2. Collecting and promoting consumers’ priorities for cancer research.
  3. Ensuring consumer participation in cancer research funding decisions and review.

Cancer Voices began to work closely with Cancer Council NSW staff towards implementing these goals, supported by peer reviewed studies, over 2002-2004.1-3

Implementation

Training for consumers

Cancer Council NSW and Cancer Voices agreed that for involvement to be meaningful and useful to researchers and funders, potential ‘engagees’ needed to have an interest in research and the opportunity to understand its five main streams, the research process and cycle, governance and ethics, as well as opportunities for consumer involvement. We worked together to develop a short training course, to be offered annually at least.

In 2005, the first formal training for consumers interested in involvement was held so that consumers could:

  • assist Cancer Council NSW in review of grant proposals each year through a Consumer Review Panel.
  • be introduced to the world of cancer research so as to be able to provide the informed consumer view to specific cancer research projects. This became important as cancer research funders required evidence that this had occurred, and as a funding criteria.

Consumer priorities for cancer research

After surveying its members about directions of research over some years, Cancer Voices proposed that a wider Consumer Research Forum be held. This took place, again in partnership with Cancer Council NSW, on 14 May 2009, with a reach beyond Cancer Voices members from around Australia. We used the ‘global café’ technique so that all 40 participants could discuss and log their priorities on five major cancer research topic areas. The outcome of this exercise has been used by Cancer Voices to alert researchers and funders to consumer priorities. We subsequently published a peer reviewed paper to inform other interested cancer research funders about what people affected by cancer would like to see researched.4

Linking researchers with informed consumer advisors

Cancer Voices’ consumer involvement in research matching program is probably its most innovative product and service. The process is facilitated by an online application form in which researchers are asked to provide all the information needed for Cancer Voices to ‘match’ them with an informed consumer advisor for their project – preferably as early in the cycle as possible. Consumers are sourced from Cancer Voices’ database of people who have attended training. After expressing interest, their nomination is provided to the requester. Both researchers and nominated consumers receive a Cancer Voices Guide which clarifies their respective roles and expectations (www.cancervoices.org.au).

Priorities directly initiated and funded – two examples

Cancer Voices consumer representatives proposed the concepts and participated in the design, development and implementation of two projects which reflected identified consumer priorities:

  • Australian Cancer Trials Online project with University of Sydney, Australia and New Zealand Clinical Trials Registry and Cancer Australia, which received a National Health and Medical Research Council grant. The ongoing outcome of this research is a consumer friendly website (www.australiancancertrials.gov.au) which facilitates searches for suitable clinical trials – a gap identified by consumers and with high potential to increase participation in clinical trials.7,8 This concept was later taken on by the National Health and Medical Research Council and applied to all clinical trials.
  • Pharmacogenomic Research for Personalised Medicine – another Cancer Voices initiative, taken up by a consortium of seven institutions and funded for five years by Cancer Council NSW. Our aim was to speed up progress in his area of research by encouraging collaboration between the best researchers in the state. A very successful collaboration, which continues post funding.

Consumer review

Cancer Council NSW again led the way in establishing Australia’s first fully fledged Consumer Review Panel. Using defined criteria to rate grant applications, consumers consider up to 30 each year. Originally their rating was weighted at 20%, with standard scientific merit review via peer review assessment at 80%. This was soon (2007) upgraded to 50-50%, a clear commitment to the value of the consumer process.

Other government agencies, cancer charities and research institutions have adopted the main elements of the Consumer Review Panel role, to greater and lesser degrees. Most also incorporate training using methods and material originally developed between Cancer Voices and Cancer Council NSW. Early adopters include Cancer Australia, the National Breast Cancer Foundation, Kolling Medical Research Institute, Macquarie University Medical Research Institute, Lowy Cancer Research Centre and the Kinghorn/Garvan Research Institutes.

Significance and future

Cancer Voices sees value in sharing this successful model. Four peer reviewed journal papers have been published about the program (see below) and are frequently cited. Cancer Voices and Cancer Council NSW have made presentations to, and had posters accepted by a number of Australian cancer conferences over the 10 years since implementation fully began. This is an excellent example of consumers, the people affected by cancer, partnering with an organisation which could make their proposals really happen. More importantly it has shown that the involvement of consumers in research does make a valuable difference, and has become well accepted by funders and researchers alike.

References

  1. Saunders C, Girgis A, Butow P, et al. From inclusion to independence – training consumers to review research. Health research policy and systems / BioMed Central 6: 3, 2008.
  2. Saunders C, Girgis A, Butow P, et al. Beyond scientific rigour: Funding cancer research of public value. Health Policy 84: 234-242, 2007.
  3. Saunders C, Crossing S, Girgis A, et al. Operationalising a model framework for consumer and community participation in health and medical research. Australia and New Zealand health policy 4: 13, 2007.
  4. Saunders C, Crossing S. Towards meeting the research needs of Australian cancer consumers. BMC Res Notes. 2012 Dec 3;5:667. doi: 10.1186/1756-0500-5-667.
  5. Crossing S. Consumer-friendly clinical trials information is here! Medical Journal of Australia 195: 56, 2011.
  6. Crossing S. Individual to collective – Cancer consumer advocacy and the Australian experience. Psycho-Oncology 16: S59-S59, 2007.
  7. Dear R, Barratt A, Askie L, et al. Adding value to clinical trial registries: insights from Australian Cancer Trials Online, a website for consumers. Clinical Trials 8: 70-76, 2011.
  8. Dear RF, Barratt AL, Crossing S, et al. Consumer input into research: the Australian Cancer Trials website. Health research policy and systems / BioMed Central 9: 30, 2011.

Be the first to know when a new issue is online. Subscribe today.