News

Prepare now for 2015 Cancer Council NSW project grants


27 September 2013

Are you applying for the next round of Cancer Council NSW project grants in 2015? Start preparing now to substantially increase your chances of being funded.

Involve a consumer in your research proposal.

The Consumer Review Form component of the application is worth 50% of your final score, meaning researchers who work directly with consumers are more likely to be assigned higher scores. The Consumer Review Guidelines (excerpt below) give greater detail about the expectations around this component of the Consumer Review Form.

In conjunction with major partners Cancer Voices NSW, Cancer Council NSW recently completed their 2013 Consumer Participation in Research Training Program, which means there are almost 30 newly-trained and eager consumers available to assist with your work. To apply for a consumer to join your team, please visit the Cancer Voices website and complete the application form.

Cancer Council NSW will be running short workshops over the next few months covering the benefits of consumer involvement, how they can help, and how to work with consumers to maximise your chances of being funded. Email the council to receive updates about these sessions.

Excerpt from Cancer Council NSW Consumer Review Guidelines

5. Consumer involvement

Outline how relevant informed consumers (e.g. from consumer 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.

Description

Although scientific merit may be sufficient to identify research of high quality and the greatest potential for success, it does not take into account the needs of consumers and the general community. At present, consumers have little input into the decisions behind the research that is funded, and there is a growing desire to make publicly funded research more responsive to public needs.

There are many opportunities for consumer involvement in all stages and all types of research. A reasonable and appropriate level of consumer involvement may vary, depending on the nature of the research being undertaken, but could include almost any kind of two-way interaction between consumers and researchers. Note that the researchers planning to disseminate their results to consumers does not constitute consumer involvement in a project; the project must receive input from a consumer. Likewise, consumers who sit on institution advisory group do not constitute consumer involvement in the specific project, which is the Cancer Council NSW requirement.

There is no single best method of consumer involvement. Even basic science/laboratory-based research can and should legitimately incorporate consumer involvement, and it is not acceptable for a researcher to claim otherwise. Some examples of consumer involvement are:

  • Work with researchers on defining or refining the research topic and developing a research proposal
  • Participate in project advisory committees
  • Participate in recruiting and/or disseminating information to participants in research
  • Conduct lay reviews of research proposals
  • Support the development of lay summaries
  • Conduct reviews of participant information sheets and consent forms
  • Assist researchers to pilot a research questionnaire
  • Produce newsletters for members of their organisation that chart the progress of research

 

Researchers are strongly advised to refer to guideline documents outlining frameworks for consumer participation in research, including those produced by the National Health and Medical Research Council (2004) and Cancer Voices Australia and Cancer Australia (2011) to ensure that they genuinely appreciate who constitutes a consumer and what constitutes legitimate consumer involvement.

Researchers are also strongly advised to have a consumer review their Consumer Review form, and to note that the Consumer Review Panel regards extremely highly the naming of a specific consumer of the consumer groups from which they have been recruited who has already been consulted and agrees to be involved in the research.

Development phase

When assessing this criterion, the Consumer Review Panel may consider some or all of the following:

  • Has consumer consultation into the development of this specific project already been undertaken?
  • Have the researchers clearly identified the nature of consumer consultation to date?
  • Has an individual consumer, or a consumer organisation, agreed to act as the consumer representative on this project?
  • Are there formal processes/structures in place that link the researchers with consumers? For example, is the consumer named as an Associate Investigator on the proposal, or is the consumer nominated as a member of the project Advisory Group?
  • Given the nature of the research, is the extent and type/s of consumer involvement appropriate? For example, it would be expected that consumer involvement in a clinical trial would be more extensive than consumer involvement in a basic science study.

Example of a response that was rated highly by the Consumer Review Panel:

Two Australian consumers (one is a member of Cancer Voices NSW) have provided input from early in the study development and will serve on the Trial Management Committee. One consumer attended the inaugural Trial Management Committee meeting in August 2006 and provided valuable feedback. He has reviewed the study protocol and patient information and consent form from a consumer's viewpoint. The other consumer attended the Trans-Tasman Radiation Oncology Group Annual Scientific Meeting in Queensland in May 2006 where the trial proposal was first presented and provided feedback from a Consumer's perspective. He also reviewed the study protocol and patient information and consent form.Auckland Hospital prostate cancer patients: Dr Pearse produced a lay summary describing the reason for the trial and the trial design. The trial was explained to a number of patients with prostate cancer receiving radiotherapy treatment for prostate cancer at Auckland hospital. Any questions about the study were addressed and the patients provided feedback.

Ongoing involvement

Is there a plan for ongoing consumer involvement in the research?When assessing this criterion, the Consumer Review Panel may consider some or all of the following:

  • Is the nature of ongoing consumer involvement clearly described, including the matters on which consumers will be consulted and the mechanisms by which tis consultation will occur?
  • Has an individual consumer, or a consumer organisation, agreed to act as the consumer representative on this project?
  • Have researchers identified the preferred approach of consumers for ongoing involvement in the research?
  • Considering the nature of the research, is the extent and type/s of ongoing consumer involvement appropriate? For example, it would be expected that consumer involvement in a clinical trial would be more extensive than consumer involvement in a basic science study.

Example of a response that was rated highly by the Consumer Review Panel:

Both consumers are important members of the Trial Management Committee and will attend the Trial Management Committee meetings to provide input and will be available for consultation with study participants. In addition, they will increase the awareness of the study among prostate cancer patients through a variety of agencies and prostate cancer support groups. Study participants will be provided with contact details in case they wish to provide feedback from a consumer perspective. These two consumers were selected because of their experience with prostate cancer and involvement with patients in the community.

Consumer Review Scoring

Please score the researcher's response to the Consumer Involvement criterion on a range of 0 to 7 (do not use decimals). Please remember that any prior knowledge you may have of the researcher and/or their research should not influence your scoring: assessment should be impartial and based solely on the information provided in the Consumer Review form. In assigning your score, please refer to the general guide to scoring depicted on the scale below and described in more detail on p.3, and consider how well you think the response addresses the following key points:

  • Has consumer consultation into the development of this specific project already been undertaken?
  • Have the researchers clearly identified the nature of consumer consultation to date?
  • Has an individual consumer, or a consumer organisation, agreed to act as the consumer representative on this project?
  • Are there formal processes/structures in place that link the researchers with consumers? For example, is the consumer named as an Associate Investigator on the proposal, or is the consumer nominated as a member of the project Advisory Group?
  • Given the nature of the research, is the extent and type/s of consumer involvement appropriate? For example, it would be expected that consumer involvement in a clinical trial would be more extensive than consumer involvement in a basic science study.
  • Is the nature of ongoing consumer involvement clearly described, including the matters on which consumers will be consulted and the mechanisms by which tis consultation will occur?
  • Have researchers identified the preferred approach of consumers for ongoing involvement in the research?