Consumer involvement in cancer research
- What is consumer involvement in research?
- How to involve consumers in your research
- What to include in your research proposal
A number of cancer research funding agencies including Cancer Council NSW, Cancer Australia and others require researchers to describe in their research proposals the extent to which consumers are involved in their research.
Specifically, the requirement for consumer involvement in research may include the need to:
- Discuss the extent to which relevant informed consumers have been involved during the development of a research proposal; and
- Provide evidence within the proposal for ongoing consumer involvement in the proposed research.
The following aims to provide cancer researchers with practical information about how to involve consumers in cancer research and what to include in their research proposals.
Consumers and consumer representatives are defined very broadly by the NHMRC’s Statement on Consumer and Community Participation in Health and Medical Research.
More specifically, consumer involvement in research is a rather loose term to describe the participation or contribution of informed community members in the design, implementation, awareness raising and/or governance of research. It varies markedly from involvement as research subjects and as passive recipients of information about research findings, such as that provided in the media.
An informed consumer is generally a member of an organised group who voices the consumer perspective and takes part in the decision-making process on behalf of consumers. Consumer representatives are usually nominated by a consumer organisation and are accountable to that organisation.
The nature and extent of consumer involvement will be dependent on the nature of the research project.
Researchers may request assistance from Cancer Voices NSW in the recruitment of consumer representatives. Cancer Voices NSW is an independent, peak advocacy organisation providing a unified voice for all people affected by cancer in New South Wales. Further information is available on the Cancer Voices NSW website.
To enable the selection of the most suitable representative a detailed request form is provided on the Cancer Voices NSW website. Please note: it will take one to three weeks for the Cancer Voices NSW nomination and selection process to be completed.
Breast Cancer Network Australia (BCNA) is the peak body for people affected by breast cancer. The BCNA trains and supports women with breast cancer to represent consumer views on all types of committees and forums through the ‘Seat at the Table’ program. Further information is available on the BCNA website.
Funding bodies such as The Cancer Council NSW, Cancer Australia, and the National Breast Cancer Foundation include consumers in their review panels, specifically to assess the relevance of the research to consumers and the level of consumer involvement in the research proposal.
Researchers should describe in their proposals: (1) consumer involvement in the project design; and (2) ongoing consumer involvement through the life of the project. In particular applicants should consider describing:
- How will consumers be engaged? How will they be identified? Will they be representatives/nominees from a particular consumer group and why?
- The type of activities/role and extent of consumer involvement at the different stages of the research project from design and planning to ongoing conduct and monitoring, and publication and translation of research results.
- The processes/structures which link the researchers with the consumers.
- How will consumers represent the target group under study?
Researchers may wish to consult with the following documents before addressing this criterion in their research proposals:
- Carla Saunders & Sally Crossing. Towards meeting the research needs of Australian cancer consumers. BMC Research Notes. 2012, 5:667.
- A Model Framework for Consumer and Community Participation in Health and Medical Research;
- Resource Pack for Consumer and Community Participation in Health and Medical Research;
- Carla Saunders, Sally Crossing, Afaf Girgis, Phyllis Butow, Andrew Penman. Operationalising a model framework for consumer and community participation in health and medical research. Aust New Zealand Health Policy. 2007 Jun 26;4 (1):13 17592651