applying for funding and involving consumers
DESCRIPTION
If you're a researcher interested in Cancer Council NSW grant funding, this presentation will guide you through the application process, as well as how and why we ask you to get consumers involved.TRANSCRIPT
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Applying for funding and involving consumers
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Types of grants we fund
1. Project grants
2. Program grants
3. Strategic Research Partnership (STReP) grants
4. Innovator grants
5. Priority-driven Collaborative Cancer Research Scheme (PdCCRS)
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Researchers (i.e. you) send grant applications
NHMRC review process Consumer panel
Scores Scores
Pow!
Funded grants
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Consumer?
A person affected by cancer as a patient, survivor, carer or family member.
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Applying for funding
RGMS
Supplementary Questions
Consumer Review Form
Goes to NHMRC – responsible for your scientific score
Goes to Cancer Council VIC – allows us to appropriately categorise your grant
Goes to Cancer Council NSW – responsible for your consumer score
Three relevant forms:
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How the consumer panel worksSource: Biblioarchives, Flickr
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READTHE
GUIDELINES
Our #1
tip!
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This is what they look like:
The Guidelines
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•What kind of benefit could this research lead to?
•i.e. why are you doing it in the first place?
Extent of benefit
•Clear, concise, numbered steps for how you’re going to get there.
Pathway for realising the benefit
•What real-world application will it have? When?
•Talk about short, medium, and long term potential -Mention barriers.
Potential for application of findings
•Does your research work on an underserved group or cancer?
•Does it exclude anyone?
Equity
•Have you had a consumer involved? Name them, who they are, and what they did. Two way communication.
•How will consumers continue to be involved?
Consumer involvement
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Consumer involvement:
“Conducting research that is with the community rather than to
or for the community.”
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1978
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Major government frameworks
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'If you don’t involve consumers, you don’t understand your business. Whatever the type of business, it’s got to have relevance to end users. This is particularly true in cancer.” Professor Jim Bishop, Executive Director, Victorian Comprehensive Cancer Centre
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Why get consumers involved?
Research more relevant to community
Greater transparency and
accountability
Can assist with recruitment
Can help with access to
marginalised groups
See problems you don’t
Can help to disseminate
results
The right reasons:
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The proof is in the publications
• “Sufficient evidence is available to show that the involvement of consumers in all aspects of research benefits both researchers and consumers and that such endeavours are achievable.” • Tallon, D., Chard, J., BMJ (2000), 320(7231):380
• “There was a strong consensus from the participants across the Programme that the involvement of service users and carers had brought tangible benefits to the research, on both the processes and outcomes of the studies. Most participants also cited personal benefits especially the learning that had taken place as a result of the involvement.” • Wyatt, K., et al Family Practice,(2008), 25(3): 154-161
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The other reason:
We won’t fund you if you don’t.
Image source: Diego3336, Flickr
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Organisations with a strong consumer presence
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What is a consumer?
Named Trained Networked
Source: Erik Abderhalden,Simon Cockell Flickr
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Who isn’t a consumer?
Patients Ethics committees
Other researchers in your project
Source: Gail Williams, Army Medicine, Crack a Spine, Oregon Department of Forestry Flickr
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Perceived Barriers
Fear of bias Lack of shared language
Lack of respect for different
points of view
Stereotypes and stigmas on
both sidesLoss of control
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“Don’t underestimate the capacity of people to get involved with these complex issues and do them well.”
Prof Fiona Stanley, AC, on involving consumers.
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How do I get consumers involved?
Planning Conduct Dissemination
Sources: Alexandre Dulaunoy, Robert Thivierge, Jez Nicholson , Flickr
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Grant application writing
• Easy• Simple• Increases your chances of being funded
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Planning
• Work with researchers to identify the topic to be researched;
• Work with researchers on defining or refining the research topic and developing a research proposal;
• Be included in project/institution advisory committees relating to research;
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Conduct
• Be involved in recruiting and/or disseminating information to participants in research;
• Support the development of lay summaries;
• Assist researchers to pilot a research questionnaire;
• Human tissue – ownership and access issues
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Dissemination
• Produce newsletters for members of their organisation that chart the progress of research;
• Contribute to conferences and journal articles, especially for lay audiences.
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Level of consumer involvement
The value of consumer input PI/CI on Grant Sentinel Node Trial Consumer Framework
Board member CTG
Clinical Trial Group CAPS
Breast Cancer Action Group
Patients
Slide Courtesy of Cancer Australia
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“Although “pure” research… may involve more scientific expertise in its execution, consumers still have the right to give their informed input to strategic priority setting, direction and design.”
NHMRC Statement on Consumer and Community Participation in Health and Medical Research
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How do I find these mysterious ‘consumers’?
AdvertisingAdvocacy groups
Service organisationsOther researchers
Sources: Tom Hughes-Croucher, Open Knowledge Foundation, Flickr
Recommended
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Don’t wait to get consumers involved.
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Additional training
- Consumer workshop (paediatric research)- 18 March 2014, 9:30 to 2:30 Doreen Dew Lecture theatre, level 4,
Children’s Hospital at Westmead.- Basic research training for consumers.
- Involving consumers in research for clinicians/researchers- 19 March 2014, Doreen Dew Lecture theatre, level 4, Children’s
Hospital at Westmead.- 1 day workshop on how to involve consumers in your research,
strong emphasis on implementation. - No charge – contact [email protected] to register.
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That’s it!Image Source: Raphaël Fauveau (flickr)
READ THE GUIDELINES