Involving community members in research

Our research funding comes from donations from the general public. Consequently, funding research that is both of significant scientific merit and of value to the community we serve and represent helps to ensure that Cancer Council NSW responds to the genuine requirements of the community that supports us.

• Who is a consumer?
• Benefits of involving consumers
• Consumer review of applications
• What constitutes a qualified consumer?
• How do I find a consumer?
• FAQs–

Who is a consumer?

Consumers are people who have been affected by cancer – patients, survivors, carers, or close family members or friends of someone diagnosed with cancer or when conducting certain kinds of public health research, members of the general community. A consumer is also usually linked to an organised group who voices the perspectives of patients as well as their carers, families, and loved ones; and has been trained to take part in research decision-making processes as a representative of the broader cancer community. Therefore, participants or patients in the research you are conducting, members of the research team, and members of an ethics committee are not considered consumers even if they have had personal experiences with cancer.

Benefits of involving consumers

• Consumer involvement has been shown to help make research more relevant to community needs. ^1-2
• Involving consumers enhances transparency and accountability, by adding a different layer of independent review to peer review. ¹
• Many consumers have useful professional skills that can assist researchers in their project endeavours. ³
  For example, consumers can often help disseminate results, or assist with participant/patient recruitment as they may have a better understanding of the views of consumers/patients and how they would like to be invited to participate as well as how to overcome barriers to participation. Consumers can also often help reach marginalised groups in which they may have connections.
• Consumers may be able to see practical problems that researchers cannot; this added perspective ensures the research you conduct will be understood to benefit the real world in the short or long term. ^2,5
• Increased consultation with end-users (e.g., patients) ensures research is as suitable to the community as possible. ²
• Consumer involvement in grant reviews leads to better-informed funding decisions, ensuring research is targeted towards community needs. ⁵
• Involving consumers in research improves acceptance of research findings in the community. ^{4, 6}
• Due to the number of consumer organisations established in recent years, consumers are well-placed to reduce the gap between researchers and the wider public. ⁷

Consumer review of applications

For each application for Cancer Council NSW Project Grant funding, applicants must complete a
Consumer Review Form illustrating how the proposed research project addresses five criteria:

1. Magnitude of the problem and extent of benefit
   Describe the problem (e.g., incidence/deaths) and how positive findings of the research would benefit those with the disease and the community on any of the following aspects: disease causation, prevention, diagnosis; treatment; physical and/or mental and/or social wellbeing; quality of life, dignity, and survival.
2. Pathway for realising the benefit
   The steps required to reach the stated end benefits of the research. Steps should include those in the current proposal project and, if necessary, beyond it – including timeframes for each step.
3. Potential for application of findings
   How the research will be applied in the real world over the short, medium and/or long term, what barriers you need to address to be successful in those goals, and how you propose to address them.
4. Equity
   Justify the selection of the study sample and explain why you have included and excluded particular groups who could potentially benefit from outcomes of this research. If relevant, outline how the proposal addresses an under-studied group and/or a group with a high burden of illness.
5. Consumer involvement
   Outline how individual informed consumers (e.g., trained by Cancer Council NSW or cancer groups such as Cancer Voices NSW, Breast Cancer Action Group NSW, Consumers Health Forum, cancer support groups, etc.) have been involved during the development of the research proposal and the plan for ongoing consumer involvement in the research. Explain how this/these consumer(s) are “qualified” to be involved.

Applicants’ responses to these criteria will subsequently be scored by a panel of trained research consumers (the Consumer Review Panel) convened by Cancer Council NSW. For the annually-offered Project Grants, to determine the final rankings of grant applications, equal weighting will be given to the NHMRC scientific review score (50%) and the Consumer Review Panel score (50%).

Sufficient detail must be provided in plain English. The Consumer Review Form must be completed in a manner which can be read as a stand-alone document and without reference to information provided in the separate, scientific application. Please assist us by providing information without using researchers’ names or institutions. The Consumer Review Panel reviews de-identified applications.

It is important for applicants to detail who is to be involved, how they are competent to be involved (for example, what research-specific training have they undertaken), and show there has been genuine consideration and planning for consumer involvement as an integral part of the research project.

To ensure that they genuinely appreciate who constitutes a consumer and what constitutes legitimate consumer involvement, applicants are strongly advised to refer to guideline documents outlining frameworks for consumer participation in research, including those produced by:

• National Health and Medical Research Council (including the Toolkit for Consumer and Community Involvement in Health and Medical Research (2020)
• Cancer Voices Australia and Cancer Australia

The website involvingpeopleinresearch.org.au also contains a wealth of extremely useful information for researchers about how to facilitate meaningful consumer involvement.

Read more – assessment criteria, scoring and examples of responses.

What constitutes a qualified consumer?

In order for consumers to be considered suitably qualified to provide informed input into the project they must have completed any of the following:

• Attended Cancer Council NSW’s annual Consumers in Research training, or
• Completed in-house training (e.g., within a consumer advisory group, panel, network, or research institute) that covers topics such as cancer epidemiology; research types, methods and cycle; and grants and ethics applications, or
• Attended a consumer training program offered by an organisation other than Cancer Council NSW (e.g. Cancer Australia), or
• Worked in the capacity of a consumer in research advisor for ≥3 years, either as a member of an advisory/steering/consumer committee, or as an advisor to individual researchers, or
• Completed the Consumers in Research training course which has two elements: the modules in the online Consumers in Research training course (hosted by Cancer Council Australia), and attended a face-to-face or Zoom workshop (either in-house or through an organisation such as Cancer Council NSW).

How are consumers trained at Cancer Council NSW?

The Cancer Council NSW ‘Consumers in Research’ training covers cancer research fundamentals, research methods, ethics and governance, and the role of consumers in research projects. Training is delivered via an online course (prerequisite) and a half-day face-to-face workshop which equips consumers to work with researchers in a consumer advisor role. If you currently have consumers involved in your research, or the research your institution conducts, that have not undertaken training, you may suggest that they complete the online consumer training course and register to attend the next workshop – date for 2022 to be advised.

To be involved in assessing applications for Cancer Council funding, trained experienced consumers attend specific training to be eligible to sit on a Consumer Review Panel.

How do I find a consumer?

Researchers across Australia can find consumer representatives by contacting the following organisations, which offer a free service to connect researchers with consumers:

• Cancer Voices, via the online ‘Request a Consumer Representative’ form. Most consumers on Cancer Voices’ database are NSW-based, so researchers residing outside NSW must be willing to communicate with the consumer advisor by email, phone, video conferencing, or offer travel support to meet with the consumer in person.
• Consumer Health Forum, via the online Request form for a consumer representative.
• Breast Cancer Network Australia, by completing a Consumer representative request form available in Word format.

In Western Australia, the Consumer and Community Health Research Network offers support, training and advice to help researchers involve consumers and the community in their work. Find out more at www.involvingpeopleinresearch.org.au or contact them at ipir@telethonkids.org.au

FAQs

Will I jeopardise my chance of being funded by Cancer Council NSW if I do not adequately address the consumer review criteria?
Yes. Funding decisions are based on both scientific peer reviewer ratings and the Cancer Council NSW Consumer Review processes. A high score in the scientific peer review and a low consumer review score will lower the overall ranked position.

What if the research involves complex processes and terminologies?
It is in researchers’ best interest to explain complex processes or names in simple ways, for example, ‘the cell protein’ rather than the full scientific name, code or classification for the protein. Consumers need to get a sense of the wider implications and societal benefits of the research, rather than knowing the complex names or systems of particular molecular or other structures.

What if the funding application is for a small part of a larger research project?
Researchers should provide detail on the way in which the Cancer Council NSW funded part of the research will, in and of itself, benefit society. This applies if current or future funding is applicable for the larger project.

Is layperson involvement in my ethical review considered consumer involvement?
Human ethics approval does not constitute genuine consumer involvement in the research nor does the participation of consumers in the research protocol itself.

Aren’t we all consumers?
Informed consumers are those who understand the views and concerns of wider groups, such as members of Cancer Voices NSW, who keep abreast of current issues faced by and the needs of those affected by cancer. Consumers who represent these groups are responsible for providing information to assist researchers and for feeding information back to their constituency. Research participants, clinicians/hospital staff and/or the researchers themselves are not considered consumers in relation to consumer involvement, and should never be described as such in the Consumer Review Form.

Can consumers be involved in basic (laboratory) research?
Yes. There is a role for consumers in basic research, although there is no ideal level of consumer involvement that fits all research – the appropriate level of consumer involvement varies across the research being conducted. See www.involvingpeopleinresearch.org.au for more information.

Contact for more information

Cancer Council NSW Research Grants Management Team
Email: research@nswcc.org.au

References

1. Gradinger, F., Britten, N., Wyatt, K., Froggatt, K., Gibson, A., Jacoby, A., … & Popay, J. (2015). Values associated with public involvement in health and social care research: a narrative review. Health Expectations, 18(5), 661-675.
2. Brett, J., Staniszewska, S., Mockford, C., Seers, K., Herron-Marx, S. & Bayliss, H. (2010) The PIRICOM Study: a systematic review of the conceptualisation, measurement, impact and outcomes of patients and public involvement in health and social care research. [WWW document]. URL http://www.ukcrc.org/systematic-review-on-ppi-inclinical-research/
3. Thompson, J., Bissell, P., Cooper, C. L., Armitage, C. J., & Barber, R. (2014). Exploring the impact of patient and public involvement in a cancer research setting. Qualitative health research, 24(1), 46-54.
4. Entwistle VA, Renfrew MJ, Yearly S, Forrester J, Lamont T: Why involve consumers in research? Lay perspectives: advantages for health research. BMJ 1998, 316:463-466.
5. O’Donnell, M., & Entwistle, V. (2004). Consumer involvement in decisions about what health-related research is funded. Health Policy, 70(3), 281-290.
6. Smith R: What Information I would want as a patient (and what I’d get in Britain) 2003. [http://resources.bmj.com/bmj/interactive/talks].
7. Oliver S. How can health service users contribute to the NHS research and development agenda? British Medical Journal 1995;310:1318–20.