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 person with lived experience?
• Benefits of involving people with lived experience
• Lived Experience review of applications
• What constitutes a qualified person with lived experience?
• How do I find a person with lived experience?
• FAQs–

Who is a Person with Lived Experience?

People with lived experience 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 person with lived experience 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 people with lived experience even if they have had personal experiences with cancer.

Benefits of involving people with lived experience

• Involving people with lived experience has been shown to help make research more relevant to community needs. ^1-2
• Involving people with lived experience enhances transparency and accountability, by adding a different layer of independent review to peer review. ¹
• Many people with lived experience have useful professional skills that can assist researchers in their project endeavours. ³
  For example, people with lived experience can often help disseminate results, or assist with participant/patient recruitment as they may have a better understanding of the views of people with lived experience and how they would like to be invited to participate as well as how to overcome barriers to participation. People with lived experience can also often help reach marginalised groups in which they may have connections.
• People with lived experience 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
• Involvement of people with lived experience in grant reviews leads to better-informed funding decisions, ensuring research is targeted towards community needs. ⁵
• Involving people with lived experience in research improves acceptance of research findings in the community. ^{4, 6}
• Due to the number of people with lived experience organisations established in recent years, people with lived experience are well-placed to reduce the gap between researchers and the wider public. ⁷

People with lived experience review of applications

For each application for Cancer Council NSW Project Grant funding, applicants must complete a
People with Lived Experience 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. People with Lived Experience Involvement
   Outline how individual informed People with Lived Experience (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 involvement in the research. Explain how these people with lived experience are “qualified” to be involved.

Applicants’ responses to these criteria will subsequently be scored by a panel of trained People with Lived Experience (the Lived Experience 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 Lived Experience Review Panel score (50%).

Sufficient detail must be provided in plain English. The Lived Experience 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 Lived Experience 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 lived experience involvement as an integral part of the research project.

To ensure that they genuinely appreciate who constitutes a person with lived experience and what constitutes legitimate involvement, applicants are strongly advised to refer to guideline documents outlining frameworks for lived experience (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 lived experience involvement.

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

What constitutes a qualified person with lived experience?

In order for individuals 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 Lived Experience in Research training, or
• Completed in-house training (e.g., within a Lived Experience/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 Lived Experience/Consumer training program offered by an organisation other than Cancer Council NSW (e.g. Cancer Australia), or
• Worked in the capacity of a lived experience 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 Lived Experience/Consumer 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 people with lived experience trained at Cancer Council NSW?

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

To be involved in assessing applications for Cancer Council funding, trained experienced people with lived experience attend specific training to be eligible to sit on a Lived Experience Review Panel.

How do I find a person with lived experience?

Researchers across Australia can find people with lived experience representatives by contacting the following organisations, which offer a free service to connect researchers with individuals:

• Cancer Voices, via the online ‘Request a Consumer Representative’ form. Most people with lived experience (consumers) on Cancer Voices’ database are NSW-based, so researchers residing outside NSW must be willing to communicate with the advisor by email, phone, video conferencing, or offer travel support to meet with the person with lived experience in person.
• Consumer Health Forum, via the online Request form for a consumer representative.

In Western Australia, the Consumer and Community Health Research Network offers support, training and advice to help researchers involve people with lived experience (consumers) and the community in their work. Find out more at www.involvingpeopleinresearch.org.au or contact them at [email protected]

FAQs

Will I jeopardise my chance of being funded by Cancer Council NSW if I do not adequately address the lived experience review criteria?
Yes. Funding decisions are based on both scientific peer reviewer ratings and the Cancer Council NSW Lived Experience Review processes. A high score in the scientific peer review and a low Lived Experience 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. People with lived Experience 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 lived experience involvement?
Human ethics approval does not constitute genuine lived experience involvement in the research nor does the participation of people with lived experience in the research protocol itself.

Aren’t we all people with lived experience?
Informed people with lived experience 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. People with lived experience 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 people with lived experience in relation to lived experience involvement, and should never be described as such in the Lived Experience Review Form.

Can people with lived experience be involved in basic (laboratory) research?
Yes. There is a role for people with lived experience in basic research, although there is no ideal level of involvement that fits all research – the appropriate level of lived experience 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: [email protected]

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.