Applying for funding and involving consumers

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)

Researchers (i.e. you) send grant applications

NHMRC review process Consumer panel

Scores Scores

Pow!

Funded grants

Consumer?

A person affected by cancer as a patient, survivor, carer or family member.

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:

How the consumer panel worksSource: Biblioarchives, Flickr

READTHE

GUIDELINES

Our #1

tip!

This is what they look like:

The Guidelines

•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

Consumer involvement:

“Conducting research that is with the community rather than to

or for the community.”

1978

Major government frameworks

'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

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:

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

The other reason:

We won’t fund you if you don’t.

Image source: Diego3336, Flickr

Organisations with a strong consumer presence

What is a consumer?

Named Trained Networked

Source: Erik Abderhalden,Simon Cockell Flickr

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

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

“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.

How do I get consumers involved?

Planning Conduct Dissemination

Sources: Alexandre Dulaunoy, Robert Thivierge, Jez Nicholson , Flickr

Grant application writing

• Easy• Simple• Increases your chances of being funded

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;

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

Dissemination

• Produce newsletters for members of their organisation that chart the progress of research;

• Contribute to conferences and journal articles, especially for lay audiences.

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

“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

How do I find these mysterious ‘consumers’?

AdvertisingAdvocacy groups

Service organisationsOther researchers

Sources: Tom Hughes-Croucher, Open Knowledge Foundation, Flickr

Recommended

Don’t wait to get consumers involved.

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 info@bt4k.com.au to register.

That’s it!Image Source: Raphaël Fauveau (flickr)

READ THE GUIDELINES